December 2023 Listening to Black Californians with Disabilities Black Californians with Disabilities actively trying to reduce stress (80%). Three in four Frequently Interact with the Health put effort into praying or engaging in spiritual activ- System While Tending to Their Health ity (75%) (Figure 1). Black Californians with disabilities are frequent users of the health care system. In the year prior to the survey, 94% of Black Californians with disabilities About the Study reported at least one visit with a doctor or health In 2021, Black-owned research firm EVITARUS conducted the care provider, and 52% reported having five or Listening to Black Californians study for CHCF. In 100 individual more visits. More Black Californians with disabilities interviews,1 18 focus groups, and a statewide survey of 3,325 adult report receiving a routine check-up (80%), routine Black Californians,2 participants described their attitudes toward or preventive screenings (81%), and care or treat- their own health and their experiences with the health care system. ment for a chronic illness (57%) than those without This set of fact sheets highlights the health care experiences of with disabilities (74% check-up, 71% screening, 24% specific groups within California's Black population. This fact sheet chronic illness). was written by Linda Cummings, PhD. Like other groups of Black Californians highlighted in About the Participants: Black Californians this series, those with disabilities engage in a variety of activities to manage and improve their physical with Disabilities and mental health. Respondents with disabilities In 2021, one in four California adults (25.4%) reported a disability, are significantly more likely to track indicators of similar to the percentage of adults reporting disabilities nationwide personal health or symptoms (80%) – such as blood (27%).3 Approximately one in five Listening to Black Californians pressure, blood sugar, cholesterol, sleep patterns, or survey respondents (19%) report having "a disability of any type headaches – than those without disabilities (69%). (such as mobility, cognitive, visual or sensory)."Reports of disabilities Four in five Black Californians with disabilities report among Black Californians rise markedly after age 55, with more than putting a "great deal" or "quite a bit" of effort half of respondents (54%) age 55 or older reporting disabilities. into focusing on their mental health (80%) and are Fact Sheet Figure 1. Things to Maintain or Improve Personal Black Californians with Disabilities Two in five Black Californians with disabilities have incomes Health Routinely Experience Negative below 200% of the federal poverty level (FPL) (42%), com- Q: Here are things that some people do because they Treatment from the Health Care System pared to one in four (26%) of those without a disability. Black think that these things will help them maintain or improve Californians with disabilities are more likely to be covered by their health. For each one, please tell me how much effort, if any, you put into doing it. "Even though these findings are stark, they are not Medi-Cal (30%) or Medicare (32%) and less likely to be covered by private insurance (34%) than those without disabilities A Great Deal/Quite a Bit, % necessarily surprising." (20% Medi-Cal, 14% Medicare, 64% private insurance). See Speaking up about your concerns when you go -Dante Allen, Executive Director, CalABLE Appendix A on page 6 for a demographic breakdown of the to the doctor even when they do not ask survey respondents with disabilities. 88% 84% Black Californians with disabilities are significantly Black Californians with disabilities experience high rates of Getting appropriate screenings or preventive care more likely than those without disabilities to report both serious physical health conditions and mental health 83% negative health care experiences, including symp- conditions. Approximately two in three (65%) report serious 76% toms not being taken seriously and a provider not physical health conditions, compared to one in three (32%) Tracking indicators of personal health or symptoms, believing them or suggesting they were to blame such as your blood pressure, blood sugar, cholesterol, of those without a disability. Nearly half (48%) report mental sleep patterns, headaches, or any other indicators for a health problem (Figure 2). health conditions, compared to one-fifth (19%) of those 80% without disabilities. 69% Half of Black Californians with disabilities (50%) Actively trying to reduce stress indicate they have experienced a time when 80% their pain was not treated adequately by a health 80% care provider, compared to 35% of those without Focusing on your mental health disabilities. And nearly one in five Black Californians 80% with disabilities report being "somewhat" or "very" 79% dissatisfied with their main source of care (19%), Praying or engaging in some other spiritual activity compared to 12% of Black Californians without 75% disabilities. 64% Reporting a Disability Reporting No Disability Notes: Sample includes 3,325 Black California residents age 18 and older, 663 of whom report a disability. Differences between groups were significant (p < .05) for all parts of this question except "Actively trying to reduce stress" and "Focusing on your mental health." Source: Listening to Black Californians, statewide survey conducted by EVITARUS (March 5–May 8, 2022). Listening to Black Californians with Disabilities www.chcf.org 2 Figure 2. Negative Experiences with Health Care Visits Many Factors Contribute to the Figure 3. Experience of Poor Treatment Because of Identity Q: Thinking more generally about your experiences Negative Health Care Experiences of with health care visits, have any of the following ever Black Californians with Disabilities Q: Have you ever been treated poorly by a doctor, happened to you? dentist, nurse, or other health care provider because People with disabilities who are also members of a of your . . . ? Those Who Answered "Yes" racial or ethnic minority, the LGBTQ+ community, Those Who Answered "Yes" Your symptoms were not taken seriously or both experience poorer health outcomes and 51% face additional discrimination from the health care For Any Reason 37% system.4 53% You were prescribed medication you didn't feel 42% you needed Race/Ethnicity Race and ethnicity, income, insurance cover- 44% 40% age, gender identity, and sexual orientation are 28% 29% compounding factors for Black Californians with A provider did not believe you were telling the truth Perceived Ability to Pay 40% disabilities in terms of how they experience the 28% 24% health care system. Personal characteristics such 21% You were not treated with respect as age, weight, or body type also affect how Black Weight and Body Type 39% Californians with disabilities are treated by the 21% 28% health care system. 14% A provider refused to order a test or treatment Age you felt you needed More than half of Black Californians with dis- 20% 36% abilities (53%) report being treated poorly by a 12% 23% doctor or health care provider for any reason. Two A provider suggested that you were personally to blame Reporting a Disability Reporting No Disability for a health problem you were experiencing in five (40%) of those with disabilities report being 34% treated poorly because of their race or ethnicity. Notes: Sample includes 3,325 Black California residents age 18 and 18% And nearly three in ten (28%) report having been older, 663 of whom report a disability. P < .05 for differences between groups. You were subjected to medical harm treated poorly because of a perceived inability to Source: Listening to Black Californians, statewide survey conducted by EVITARUS (March 5–May 8, 2022). 24% pay (Figure 3). 11% Reporting a Disability Reporting No Disability Notes: Sample includes 3,325 Black California residents age 18 and older, 663 of whom report a disability. P < .05 for differences between groups. Source: Listening to Black Californians, statewide survey conducted by EVITARUS (March 5–May 8, 2022). Listening to Black Californians with Disabilities www.chcf.org 3 Black Californians with Disabilities Figure 4. Strategies Used to Increase Chances of Being Treated with Respect Often Avoid Care or Adopt Protective Behaviors When Seeking Care Q: Next is a list of things some people may do to increase the chances that they will be treated with Nearly two in five Black Californians with disabili- respect when seeking health care. For each one, please ties (38%) report avoiding care because they felt indicate if you have ever used that approach or strategy when seeking care. they would not be treated fairly or with respect, which is significantly more than those without dis- Those Who Answered "Yes" abilities (23%). Signaled to providers that you are educated, knowledgeable, and/or prepared to hold them accountable Respondents with disabilities also deploy various 51% strategies to increase their chances of being treated 40% with respect when seeking health care. Over one Took a companion with you into the exam room during an appointment in three of Black Californians with disabilities (35%) 44% say they minimize questions and concerns to avoid 31% being perceived as "difficult," compared to one Tailored your speech, and/or behavior, to put providers in four of those without disabilities (25%). Half of "more at ease," or to avoid being off-putting those with disabilities (51%) report signaling their 43% education and knowledge to providers, compared 34% Paid special attention to how you were dressed to 40% of those without disabilities (Figure 4). 40% 31% Minimized questions and concerns to avoid being perceived as "difficult" 35% 25% Recorded interactions 14% 8% Reporting a Disability Reporting No Disability Notes: Sample includes 3,325 Black California residents age 18 and older, 663 of whom report a disability. P < .05 for differences between groups. Source: Listening to Black Californians, statewide survey conducted by EVITARUS (March 5–May 8, 2022). Listening to Black Californians with Disabilities www.chcf.org 4 Key Areas for Action $ Include people with disabilities in state $ Recognize disability as a part of diversity, data collection efforts. Although there have equity, and inclusion (DEI) efforts. Many been robust state efforts to ensure the collec- health systems and medical schools have "Disability policy changes should be made at the table tion of data pertaining to race, ethnicity, and committed to DEI efforts, which often refer before the press conference and include people with language, disability advocates have pointed to investments in racial or ethnic diversity. disabilities." out that when it comes to improving health Including people with disabilities - who -Eric Harris, Director of Public Policy, care for people with disabilities, there is not make up 26% of the American population - Disability Rights California enough data. Routinely collecting data on in DEI efforts would help build a workforce people with disabilities will help researchers that reflects the needs and experiences of all compare the health outcomes and health Californians.9 Policymakers and health care providers have key differences of people with and without dis- roles to play in the improvement of care that Black abilities, which can in turn lead to better Californians with disabilities receive. Disability identification of health care and public health experts recommend the following strategies to solutions. THE TAKEAWAY address the inequities that Black Californians with disabilities face: Black Californians with disabilities regularly $ Train health care providers on holistic care receive health care and engage in health- for people with disabilities. Biases that some Enforce compliance with the Americans seeking behaviors. Yet, they often face $ providers hold about people with disabilities with Disabilities Act (ADA), the Affordable discrimination or poor treatment when have real-world repercussions for their health Care Act (ACA), and the Rehabilitation Act seeking care. Policymakers and health care care.5 For instance, assumptions that people of 1973. Under the ADA, Section 1557 of the providers should recognize and address with disabilities are inherently a high-risk ACA, and Section 504 of the Rehabilitation the many challenges that Black Californians population and less worthy of care have led to Act of 1973, people with disabilities are enti- with disabilities face when seeking and forced sterilization, denials of health care, and tled to reasonable accommodations to access receiving health care. coercion in treatment.6 The disability weight- health care services, including both physical ings used in the disability-adjusted life years access and communication access. However, (DALYs) approach devalues the lives of people too many providers fail to provide sufficient with disabilities, which leads to further biases access, often due to the costs associated in their care.7 Training providers on holistic with accommodating those with disabilities. care for all patients, regardless of their ability, Ensuring accessibility requires both enforcing is a first step toward creating a health care existing laws and providing adequate reim- system that is less ableist.8 bursement or incentives for accommodations. Listening to Black Californians with Disabilities www.chcf.org 5 Appendix A. Demographics of Respondents Who Reported a Disability (N = 663, Age 18+) PARTICIPANTS PARTICIPANTS PARTICIPANTS PARTICIPANTS (#) (%) (#) (%) GENDER IDENTITY INSURANCE COVERAGE Female 4 01 55% Employer-Provided 180 28% Male 24 8 45% Medi-Cal 179 30% AGE Medicare 166 32% Other coverage 103 8% 18 to 34 56 20% 35 to 44 76 12% Notes: Ns are unweighted. Percentages are weighted. "Prefer not to say" is not shown. Fourteen respondents identified as non-binary or preferred to provide a 45 to 54 98 14% verbatim response describing their gender. Ten respondents did not share their age. Thirty-five respondents had no health insurance coverage. 55 to 64 181 26% Source: Listening to Black Californians, statewide survey conducted by EVITARUS 65 to 74 157 18% (March 5-May 8, 2022). 75+ 85 10% REGION Los Angeles County 264 34% San Francisco Bay Area 146 21% Inland Empire 76 15% Other Southern California 64 10% North 53 7% Central Valley 49 11% Central Coast 11 2% Listening to Black Californians with Disabilities www.chcf.org 6 Endnotes 1. Linda Cummings, In Their Own Words: Black Californians on Racism and Health Care, California Health Care Foundation (CHCF), January 2022. 2. Linda Cummings, Listening to Black Californians: How the Health Care System Undermines Their Pursuit of Good Health, CHCF, October 2022. 3. "Disability and Health Data System (DHDS)," Centers for Disease Control and Prevention (CDC), last updated May 2023. 4. Monika Mitra, et al., "Advancing Health Equity and Reducing Health Disparities for People with Disabilities in the United States," Health Affairs 41, no. 10 (October, 2022). 5. Omar Sultan Haque and Michael Ashley Stein, "COVID- 19 Clinical Bias, Persons with Disabilities, and Human Rights," Health Hum Rights 22, no. 2 (December, 2020): 285-290. 6. "Fighting Ableism," Stanford University, accessed October 3, 2023. 7. Trude Arnesen and Erik Nord, "The value of DALY life: problems with ethics and validity of disability adjusted life years," BMJ (November 27, 1999): 1423-5. 8. Ari Ne'eman, "I will not apologize for my needs," New York Times, March 23, 2020. 9. Deepa Shivaram, "Across Federal Workforce, People with Disabilities See Need For More Representation," NPR, July 31, 2021. Listening to Black Californians with Disabilities www.chcf.org 7