Disabled Patients' Experiences of Healthcare Services in a Nationally Representative Sample of U.S. Adults

ABSTRACT

Objective

To examine patient‐reported experiences of healthcare services by disability status.

Study Setting and Design

We conducted a cross‐sectional analysis of Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures of overall healthcare satisfaction, timeliness of care, and patient‐provider interactions to assess differences by disability status and, among those with a disability, between those with sensory, physical, cognitive, or multiple disabilities.

Data Sources and Analytic Sample

CAHPS measures included in the 2021 Medical Expenditure Panel Survey for U.S. adults.

Principal Findings

People with disabilities reported significantly lower ratings of healthcare services compared to the general population (7.98, 95% CI: 7.89–8.08 vs. 8.38, 95% CI: 8.34–8.43 on a scale of 0 [worst] to 10 [best]), with the lowest satisfaction among people with multiple disabilities (7.87, 95% CI: 7.72–8.02). Disabled people reported worse experiences on all measures compared to people without disabilities. People with physical, cognitive, and multiple disabilities reported significantly worse experiences of healthcare services than those with sensory disabilities.

Conclusions

In a nationally representative sample of U.S. adults, disabled people reported lower satisfaction with healthcare services, less timely care, and worse provider interactions than people without disabilities. Changes to policy and practice are needed to improve healthcare experiences for disabled people.

Summary.

• What is known on this topic

  • ○
    People with disabilities experience significant health and health care disparities.
  • ○
    Structural ableism presents a significant barrier to accessing high‐quality healthcare services for disabled individuals.
  • ○
    Few studies have examined differences in patient‐reported experiences and satisfaction with healthcare services across disability subgroups.
• What this study adds

  • ○
    Disabled U.S. adults reported lower overall satisfaction with healthcare services, less timely care, and worse interactions with providers than people without disabilities.
  • ○
    Among U.S. adults with disabilities, people with physical, cognitive, and multiple disabilities reported poorer experiences of healthcare services than those with sensory disabilities.
  • ○
    Given the disparities in experiences of healthcare services, changes to policy and practice are needed to improve healthcare experiences for disabled people.

1. Introduction

More than 1 in 4 people in the United States have a disability [1]. While the number of disabled people is increasing over time, there is strong evidence that people with disabilities face significant health disparities [1, 2, 3]. First identified as a disparities population in November 2000 by the U.S. Department of Health and Human Services (DHHS) and formally recognized as a health disparities population in September 2023 by the National Institutes of Health, disabled people experience increased rates of comorbid health conditions and negative social conditions [3, 4, 5]. These conditions, along with the impact of the disability itself, contribute to increased healthcare service needs compared to people without disabilities [2, 3, 4].

Disabled people, however, encounter substantial barriers to accessing high‐quality healthcare services in part due to structural ableism in medicine and public health, defined as “a system of historical and contemporary policies, institutions, and societal norms and practices that devalue and disadvantage people who are disabled, neurodivergent, chronically ill, mad, and/or living with mental illness and privilege people who are positioned as able‐bodied and able‐minded.” [6] Evidence of structural ableism in the health system is apparent in data indicating disabled people are more likely to forgo medical care because of cost, lack of mobility‐related or communications‐related accommodations in healthcare settings and providers' lack of training, and in some cases willingness, to support disabled patients in their practice [6, 7, 8].

Negative experiences of healthcare services among patients with disabilities are well documented across medical treatment settings [9, 10, 11, 12, 13, 14]. The conceptual model of healthcare disparities and disability describes the interaction between individual factors, including type and severity of impairment and functional limitations, and environmental factors as key to understanding disparities experienced by disabled people [15]. While few studies examine differences in healthcare experiences among people with disabilities based on disability‐related characteristics, there is some evidence that experiences vary by disability type and disability identity [16, 17].

We add to this evidence base by examining patient‐reported experiences of healthcare services among individuals with and without disabilities and by disability type using a nationally representative sample of non‐institutionalized U.S. adults. Based on prior literature, we hypothesize disabled people will report worse experiences of healthcare services than those in the general population, and people with multiple disabilities will report the worst experiences [17]. We use both person‐ and identity‐first language throughout, as a reflection of differing preferences within the disability community [18].

2. Methods

We used publicly available Medical Expenditure Panel Survey (MEPS) Household Component data from 2021 [19]. MEPS is a large‐scale survey fielded by the Agency for Healthcare Research and Quality and is nationally representative of the non‐institutionalized, civilian population in the U.S. The Household Component includes data from families and individuals and their healthcare providers and employers related to demographic characteristics, health status, and health service use [19].

Our analysis included all adults (age 18 and older) participating in the 2021 survey. We identified people with sensory (hearing and/or vision), physical, and cognitive disabilities (Appendix A). Based on these categories, we defined two disability measures: (1) among the entire adult sample, those with (vs. without) any disability and (2) among those with a disability, those with a sensory disability only, a physical disability only, a cognitive disability only, or multiple disabilities.

Outcomes of interest were the 12 Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures included in MEPS. These measures include an overall rating of healthcare services received in the prior 12 months, three measures related to timeliness of care (e.g., ability to get care right away), and eight measures related to interactions with healthcare providers (e.g., providers listened carefully). Respondents rated overall satisfaction with healthcare services on a scale from 0 (worst) to 10 (best healthcare possible). All other measures used a four‐item response scale indicating frequency of the event. To assess optimal healthcare scenarios (i.e., always reporting high‐quality care), items were dichotomized for analysis (“always” vs. “usually,” “sometimes,” or “never”). Full item wording and response options are included in Appendix B.

Demographic measures included self‐reported age, sex, race/ethnicity, annual household income, educational attainment, employment, marital status, region, and insurance coverage. Insurance coverage groups indicate enrollment (or uninsured status) for the full calendar year and are not mutually exclusive (e.g., individuals could report both Medicaid and Medicare coverage).

We used chi‐squared tests to assess differences in demographic characteristics across disability groups. We used adjusted linear (for overall satisfaction with healthcare services) and logistic (for all other measures) regression models to assess the relationship between experiences of healthcare services and the two measures of disability status (presence of any disability and, among those with a disability, disability type). Regression results were transformed into predicted probabilities to improve interpretability. We conducted two sensitivity analyses: (1) ordered logistic regression using the full four‐item response scale for measures of timeliness to care and patient‐provider interactions and (2) the use of a disaggregated sensory disability category (i.e., considering vision and hearing impairments separately) across all measures. All models controlled for demographic characteristics and used survey weights to account for sampling and nonresponse to allow for generalizability to the U.S. population. Analyses were conducted using Stata version 18 [20]. This study was approved by the Rutgers University Institutional Review Board.

3. Results

Nearly one‐fourth (N = 5328) of the 22,552 adults participating in the 2021 MEPS reported at least one disability. Among those with a disability, 17% (N = 879) had a sensory disability, 40% (N = 2114) a physical disability, 8% (N = 447) a cognitive disability, and 35% (N = 1888) had disabilities across multiple categories. Individuals with and without disabilities, as well as subgroups among those with any disability, differed in terms of demographic characteristics (Table 1). Compared to the general population, disabled people were older and more likely to be female, white, of lower socioeconomic status (income and education level), unemployed, and widowed or divorced. Disabled people were more likely to live in the Midwest and less likely to live in the South. Compared to the general population, disabled people were more likely to be insured by Medicare or Medicaid and less likely to have private insurance or be uninsured.

TABLE 1.

Demographic characteristics by disability status, 2021.

	Any disability		Disability categories
	General population (reference group)	Disabled population	Sensory (reference group)	Physical	Cognitive	Multiple
N	17,224	5328	879	2114	447	1888
Age group
18–29	22.9	6.6***	8.6	3.3**	24.0***	3.9**
30–39	20.1	6.4***	5.2	5.5	16.4***	5.0
40–49	17.5	8.3***	8.0	8.6	10.3	7.5
50–64	24.1	27.8***	21.9	31.9***	23.4	27.3*
65+	15.4	51.0***	56.4	50.4*	26.0***	56.3
Sex
Female	50.3	55.8***	41.3	61.0***	52.4**	58.6***
Male	49.7	44.2***	58.7	39.0***	47.6**	41.4***
Race/ethnicity
White, non‐Hispanic	59.1	71.0***	74.0	72.5	63.4**	69.6
Hispanic	18.9	9.8***	11.0	8.5	13.1	9.7
Black, non‐Hispanic	12.1	12.2	9.3	12.4*	14.8*	12.9*
Asian, non‐Hispanic	7.0	3.1***	3.0	2.9	3.9	3.2
Other, non‐Hispanic	3.0	3.9*	2.7	3.7	4.7	4.5
Household annual income
< $25,000	12.6	30.1***	18.8	26.5***	32.8***	40.4***
$25,000–$49,999	17.1	22.7***	20.9	22.4	22.1	24.5
$50,000–$74,999	16.7	15.5	15.1	17.5	14.4	13.5
$75,000–$99,999	13.9	10.9***	12.0	12.8	8.5	8.5*
$100,000+	39.6	20.8***	33.1	20.8***	22.1**	13.1***
Highest degree attained
Less than high school	9.9	13.1***	8.7	10.2	15.2**	18.7***
High school	41.0	20.1***	50.2	48.4	53.7	50.9
Bachelors degree	23.3	14.4***	15.8	16.4	12.1	11.9*
Graduate degree or higher	14.1	10.09***	12.9	11.8	7.8*	6.8***
Other	10.0	11.8*	11.7	12.9	10.2	11.0
Unknown	1.7	0.6***	0.7	0.3	1.0	0.7
Employment
Unemployed	28.4	67.2***	54.7	65.5***	57.2	79.9***
Employed	70.3	31.9***	44.2	34.1***	41.3	19.1***
Unknown	1.3	0.8*	1.1	0.4	1.5	1.0
Marital status
Single	32.4	18.5***	13.1	16.1	44.3***	16.6
Married	53.2	43.3***	57.7	46.0***	33.0***	34.7***
Widowed	3.7	17.7***	13.9	16.2	7.1***	25.0***
Divorced/separated	10.8	20.5***	15.2	21.7***	15.6	23.7***
Region
Northeast	17.6	16.5	17.2	17.0	18.2	15.0
Midwest	20.1	23.7***	21.2	23.6	24.9	24.9
South	27.9	39.6	39.4	39.8	34.2	41.0
West	24.5	20.3***	22.2	19.7	22.7	19.2
Insurance coverage a
Medicare	14.6	56.9***	57.0	54.6	36.2***	66.2***
Medicaid	9.7	18.6***	8.0	15.6***	26.5***	26.2***
Private insurance	62.6	38.9***	49.0	44.2	36.9**	27.0***
Uninsured	8.2	2.7***	3.7	2.8	5.1	1.2**

Note: *p < 0.05; **p < 0.01; ***p < 0.001. Demographic characteristics of adults include in the 2021 Medical Expenditure Panel Survey (MEPS) by disability status. Chi‐squared tests were used to assess differences in outcomes comparing individuals with and without disabilities and, among those with a disability, between individuals with sensory, physical, cognitive, or multiple disabilities. Unless otherwise noted, all groups are mutually exclusive. Percents may not add to 100 due to rounding.

^a Insurance coverage indicates full calendar year coverage or uninsured: Medicare, Medicaid, and private insurance. Categories are not mutually exclusive.

Disabled adults reported significantly lower overall satisfaction with their healthcare services (adjusted rating: 7.98, 95% confidence interval (CI): 7.89–8.08) than adults without disabilities (8.38, 95% CI: 8.34–8.43) (Figure 1). Among those with disabilities, people with multiple disabilities reported significantly lower overall satisfaction (7.87, 95% CI: 7.72–8.02) compared to those with sensory disabilities (8.39, 95% CI: 8.21–8.58) (full model results included in Appendix C).

FIGURE 1.

Overall rating of healthcare services by disability status, 2021. *p < 0.05; **p < 0.01; ***p < 0.001. Predicted rating of quality of all healthcare services in the last 12 months from 0 (worst healthcare possible) to 10 (best healthcare possible). Ratings were predicted from two linear regression models; the first used a binary measure of disability (any vs. no disability) and the second used a categorical variable for disability type, among those with a disability (sensory vs. physical, cognitive, and multiple). Both models adjusted for age, sex, race/ethnicity, income, education, employment, marital status, region, and insurance coverage. Full model results are available in Appendix C. Vertical bars represent the 95% confidence intervals.

People with disabilities reported significantly worse experiences than those without disabilities across all measures of timeliness of care and patient‐provider interactions (Table 2). Of note, there was a more than 10‐percentage point difference between disabled and non‐disabled respondents on six measures related to patient‐provider interactions. Disabled people were significantly less likely to report that health providers always listened carefully to them (59.6% of non‐disabled people, 95% CI: 58.2%–61.0% vs. 49.3% of disabled people, 95% CI: 46.9%–51.7%), explained things in a way that was easy to understand (62.7%, 95% CI: 61.4%–64.1% vs. 52.1%, 95% CI: 49.6%–54.5%), showed respect for what they had to say (67.2%, 95% CI: 65.9%–68.5% vs. 54.0%, 95% CI: 51.5%–56.5%), spent enough time with them (54.4%, 95% CI: 53.0%–55.8% vs. 43.7%, 95% CI: 41.3%–46.1%), or gave advice that was easy to understand (73.4%, 95% CI: 71.9%–74.8% vs. 62.0%, 95% CI: 59.1%–64.6%). No one in the sample reported that providers always gave instructions about what to do; therefore, that measure was excluded.

TABLE 2.

Predicted probabilities of agreement with Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures by disability status, 2021.

	No disability a	Any disability	Among those with a disability
			Sensory disability a	Physical disability	Cognitive disability	Multiple disabilities
	% (95% CI)	% (95% CI)	% (95% CI)	% (95% CI)	% (95% CI)	% (95% CI)
Timeliness of care measures
I always received care right away	57.0 (54.7–59.2)	50.2** (46.9–53.5)	67.1 (59.7–74.5)	51.3** (46.8–55.7)	45.6** (34.1–57.1)	49.9*** (45.4–54.4)
I always received an appointment as soon as I thought it was needed	46.3 (45.0–47.6)	42.7* (40.5–45.0)	52.1 (47.1–57.1)	48.7 (45.6–51.7)	45.2 (37.0–53.5)	43.6** (40.2–47.0)
It was always easy to see a specialist when needed	47.5 (45.8–49.1)	39.4*** (36.9–41.9)	48.0 (42.4–53.7)	44.7 (41.2–48.3)	36.4* (27.0–45.8)	38.3** (34.6–42.0)
Patient‐provider interaction measures
Health providers always listened carefully to me	59.6 (58.2–61.0)	49.3*** (46.9–51.7)	62.6 (57.7–67.4)	52.7** (49.5–55.9)	49.2** (40.7–57.7)	45.5*** (41.9–49.1)
Health providers always explained things in a way that was easy to understand	62.7 (61.4–64.1)	52.1*** (49.6–54.5)	62.0 (57.1–66.8)	56.1 (52.9–59.3)	50.6* (41.9–59.3)	47.2*** (43.6–50.9)
Providers always showed respect for what I had to say	67.2 (65.9–68.5)	54.0*** (51.5–56.5)	65.3 (60.4–70.1)	58.4* (55.2–61.6)	56.3 (48.1–64.6)	50.8*** (47.2–54.5)
Health providers always spent enough time with me	54.4 (53.0–55.8)	43.7*** (41.3–46.1)	55.2 (50.2–60.2)	48.6* (45.5–51.8)	44.8* (36.2–53.5)	43.7*** (40.1–47.3)
The advice given by doctors or other health providers was always easy to understand	73.4 (71.9–74.8)	62.0*** (59.1–64.6)	69.5 (64.1–74.9)	64.1 (60.7–67.6)	60.2 (50.5–69.9)	56.2*** (52.2–60.2)
Doctors or other health providers always asked me to describe how I was going to follow their instructions	27.2 (25.7–28.7)	24.0* (21.8–26.1)	30.6 (25.4–35.9)	24.7* (21.8–27.6)	26.4 (18.4–34.4)	25.1 (21.8–28.5)
I was always offered help in filling out forms at the office	13.3 (12.2–14.5)	10.6* (9.1–12.2)	10.5 (8.3–12.6)	14.6 (10.3–18.9)	12.6 (5.1–20.0)	12.6 (10.1–15.1)

Note: *p < 0.05; **p < 0.01; ***p < 0.001. Predicted probabilities were estimated following logistic regression. Two models were run for each outcome; the first used a binary measure of disability (any vs. no disability) and the second used a categorical variable for disability type, among those with a disability (sensory vs. physical, cognitive, and multiple). All models adjusted for age, sex, race/ethnicity, income, education, employment, marital status, region, and insurance coverage. Full model results are available in Appendix C. 95% CI is the 95% Confidence Interval for the predicted probability.

^a Reference group.

Among disabled people, those with physical (51.3%, 95% CI: 46.8%–55.7%), cognitive (45.6%, 95% CI: 34.1%–57.1%), and multiple disabilities (49.9%, 95% CI: 45.4%–54.4%) were significantly less likely than those with sensory disabilities (67.1%, 95% CI: 59.7%–74.5%) to report they always received care right away or that providers always listened carefully to them (52.7%, 95% CI: 49.5%–55.9%; 49.2%, 95% CI: 40.7%–57.5%; 45.5%, 95% CI: 41.9%–49.1% vs. 62.6%, 95% CI: 57.7%–67.4%) or spent enough time with them (48.6%, 95% CI: 45.5%–51.8%; 44.8%, 95% CI: 36.2%–53.5%; 43.7%, 95% CI: 40.1%–47.3% vs. 55.2%, 95% CI:50.2%–60.2%). People with physical disabilities were significantly less likely to report providers always showed respect for what they had to say (58.4%, 95% CI: 55.2%–61.6%) or were asked to describe how they would follow directions (24.7%, 95% CI: 21.8%–27.6%) compared to those with sensory disabilities. People with cognitive disabilities were significantly less likely to report it was always easy to see a specialist (36.4%, 95% CI:27.0%–45.8%) or that providers always explained things in a way that was easy to understand (50.6%, 95% CI: 41.9%–59.3%) relative to the sensory disability population. People with multiple disabilities were significantly less likely to agree with all measures other than being asked how they would follow directions or being offered help in filling out forms compared to the sensory disability group.

Findings in sensitivity analyses were largely consistent with main analyses. However, in the ordered logistic regression analysis (Appendix D), differences between individuals with and without disabilities were not significant on measures of receiving an appointment as soon as needed, being asked about following instructions, and being offered help filling out forms. Differences between individuals with sensory disabilities and those with cognitive and physical disabilities were also attenuated on some measures, though those with cognitive disabilities were significantly less likely to report that providers showed respect for what they had to say. In the analysis with separate sensory disability measures (Appendix E), individuals with vision impairments were significantly less likely to report ease of seeing a specialist compared to those with hearing impairments; no other differences were observed.

4. Discussion

In a nationally representative sample of non‐institutionalized U.S. adults, we found that disabled people report lower satisfaction with their healthcare than their non‐disabled counterparts. There were large discrepancies between the frequency with which disabled and non‐disabled people reported having positive interactions with their healthcare providers; fewer people with disabilities reported that providers always listened carefully to them, explained things, or gave advice that was easy to understand, showed respect for what they had to say, or spent enough time with them. Among people with disabilities, those with multiple disabilities reported the lowest overall rating of healthcare services, less access to timely care, and the worst interactions with providers.

These findings are consistent with prior literature on overall ratings of healthcare services by individuals with disabilities and on poor provider communication with disabled patients [14, 21, 22, 23]. Patient‐provider communication has a positive relationship with access to healthcare services and health outcomes, highlighting the importance of improving providers' ability to communicate with disabled patients in reducing health disparities [24, 25]. Beyond being a necessary component of high‐quality healthcare, effective communication is a key part of the Americans with Disabilities Act and other disability civil rights laws, which mandate that all organizations serving the public, including healthcare facilities, provide communication aids and services (e.g., interpreter, large print) necessary for disabled people to achieve equitable access to goods and services [26, 27].

Among people with disabilities, people with physical, cognitive, and multiple disabilities were less likely to report always receiving care right away, that providers always listened carefully to them, or that providers always spent enough time with them. People with multiple disabilities tended to have the worst outcomes. Few other studies have examined differences in healthcare experiences across disability types. There is some evidence, including a prior analysis using MEPS data, that people with multiple disabilities experience worse health outcomes and are more likely to report difficulty accessing preventive services and forgoing other treatments [17, 28]. Addressing disparities in quality of care for disabled people requires different approaches and accommodations depending on each patient's specific needs and preferences. Differences observed here may reflect providers' increased awareness of communication needs for patients with sensory disabilities (e.g., providing written materials in Braille or large print for patients with vision impairments) than they do for communicating effectively with other disabled patients (e.g., communicating in plain language for patients with cognitive impairments) [29, 30].

Ultimately, the interventions needed to address disparities in patient experiences of healthcare services are those that work to mitigate and dismantle structural ableism [31]. The provision of disability‐competent and affirming healthcare, including accessible communication and appointments, is a key factor in the relationship between ableism and the health of disabled populations [6]. These processes are also impacted by further upstream factors, including attitudes toward disability and policies that shape interactions with healthcare systems and service delivery [6]. One promising policy change is the recent update to Section 504 of the Rehabilitation Act by DHHS, which strengthens protections for people with disabilities in healthcare settings [27]. In part, the updated rule prohibits healthcare facilities from making medical treatment decisions or value assessments in ways that reflect biases or devaluation of the lives of individuals with disabilities and requires facilities to ensure effective communication through the provision of auxiliary aids or services (e.g., interpreter, text telephone) and to meet minimum standards for the availability of accessible medical equipment (e.g., height adjustable tables, weight scales designed for wheelchair use) [27].

Future research should focus on ensuring that efforts to improve care for disabled patients are effective and that differences in implementation and enforcement do not create or exacerbate disparities in experiences of care across disability sub‐populations. There is also considerable need for qualitative research and surveys conducted with diverse populations of disabled people to examine healthcare experiences and receipt of guideline‐concordant treatments across providers and setting types, states, health plans, and payers to better understand the impact of policy choices across disability populations [15, 16].

This study should be viewed in light of its limitations. First, there are well‐documented limitations in defining disability through functional limitations [2, 32, 33]. These definitions undercount the disabled population by not capturing disabled people who do not experience functional limitations, experience intermittent functional limitations, or are in an accessible environment that mitigates functional limitations. MEPS also excludes individuals living in institutional settings and individuals with higher support needs who may be unwilling or unable to participate in the multi‐year MEPS data collection process. Therefore, these findings may not be generalizable to populations in non‐community settings or with higher levels of support needs. It is likely that the exclusion of these populations leads to a more conservative estimate of the differences in healthcare experiences by disability status. The CAHPS measures ask individuals to rate experiences across a full year of healthcare services, precluding the ability to disaggregate experiences by specific provider or service types (e.g., mental health vs. physical health). The CAHPS measures also focus on the timeliness of care and patient‐provider communication, leaving out other factors that influence access to and quality of care for disabled populations, such as the availability of accessible medical equipment. Dichotomized response measures mask differences in intermediate responses. While these results are more interpretable, we included a sensitivity analysis assessing the full response scale. Finally, as this is an observational study, we cannot determine cause and effect in the relationship between disability and experiences of healthcare services.

5. Conclusion

In a nationally representative sample of noninstitutionalized U.S. adults, disabled people reported lower overall satisfaction with healthcare services, less timely access to care, and worse interactions with providers than people without disabilities. Among people with disabilities, those with multiple disabilities reported the worst experiences. Changes to policy and practice to increase disability‐competent and affirming care and dismantle medical ableism are needed to improve care experiences for disabled people.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1. Appendix Information.

Stone E. M., Bonsignore S., Crystal S., and Samples H., “Disabled Patients' Experiences of Healthcare Services in a Nationally Representative Sample of U.S. Adults,” Health Services Research 60, no. 4 (2025): e14598, 10.1111/1475-6773.14598.

Data Availability Statement

All data used in this analysis are publicly available from the Agency for Healthcare Research and Quality at: https://meps.ahrq.gov/mepsweb/.