Perspectives on Health Policy From People With Disabilities

Abstract

People with disabilities are marginalized and face barriers to participation in society, including political participation and representation. While data indicate that people with disabilities have similar political preferences to the overall U.S. population, little research has been conducted to assess the health policy views of people with disabilities in their own words. This study uses qualitative data collected between 2017 and 2019 via 35 telephone interviews and 484 open-ended responses from a nationally representative survey to analyze what people with disabilities would like policymakers to know about health care and health insurance for people with disabilities. Results reveal that this population’s perceptions of social exclusion and stigma inform what they would like to tell policymakers. In addition, people with disabilities were largely supportive of Affordable Care Act features and framed expanded or universal access to health care as a human right or a moral issue.

Keywords

civil rights health care Medicare/Medicaid policy

People living with one or more disabilities comprise 25.7% of the U.S. noninstitutionalized adult population (Okoro et al., 2018), and the number of people with disabilities will continue to rise due to population aging. However, people with disabilities are less likely to be employed, more likely to live in poverty, and more likely to rely on public insurance coverage (Brault, 2012; Kennedy et al., 2017; Palmer, 2011). Understanding the needs and perspectives of this population is critical for policy, particularly in the areas of health and employment.

Exclusion and Stigma

People with disabilities face social stigma and barriers to full participation in society. They are stigmatized in the sense that “elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them” (Link & Phelan, 2001, p. 377; Green et al., 2005). In a qualitative study of eight adults with diverse types of disabilities and seven mothers of children with diverse types of disabilities, Green et al. (2005) found that people with disabilities experienced each of these components of stigma, with negative psychosocial consequences. People with disabilities are also subject to fear and avoidance, authoritarianism because they are perceived as irresponsible, and benevolence because they are seen as childlike and in need of care (Rusch et al., 2005). Despite the success of the disability rights movement in instituting policies such as the Americans with Disabilities Act, disability continues to connote marginalization and barriers to social participation (Grue, 2016; Hammel et al., 2008). For example, Grue (2016) argues that people with disabilities as a group are largely seen as having some form of limitation but few positively valued characteristics. In a study of people with many different types of disabilities, Hammel et al. (2008) found that this group faces barriers to full participation in society for a variety of reasons, including because the stigma associated with disability often involves the belief that impairment in one area of function invalidates abilities or contributions in other areas. People with disabilities may not feel as though they are valued members of society, which further limits their social participation (Hammel et al., 2008). In addition, a confluence of other factors such as limited finances and lack of accessible buildings, housing, and transportation continues to restrict the full inclusion and participation of people with disabilities in society (Hammel et al., 2008).

A key area in which people with disabilities experience social exclusion is in employment. Data from 2016 indicate that only 34.8% of working-age people with a disability engaged in paid work in the past 12 months, compared with 83.0% of working-age people without a disability (Kennedy et al., 2017). In addition, only 15.5% of those with a disability worked 40 or more hours in the previous week, compared with 57.7% of those without a disability. Employment is closely tied to self-identity, relationship development, feeling valued, and the development of “civic skills” such as working with others, public speaking, and communication that can be useful for community and political participation (Hall, 2009; Schur, 2002). In addition, the underrepresentation of people with disabilities in the workplace likely reduces the visibility of this group in society, both through their absence in the workplace and through their having less monetary resources to engage in community activities.

Political Attitudes and Participation

During the 2016 election, U.S. people with disabilities had similar party affiliations and ideological values to those without disabilities (Pew Research Center, 2016). However, people with disabilities may differ from the nondisabled population on specific political viewpoints. For example, people with disabilities are more likely to believe that the government should provide jobs for everyone who wants one and provide health care for the sick, compared to persons without disabilities (Schur & Adya, 2013). This study also indicated that while people with disabilities favored increased government spending on health, they did not differ in support for spending in any other area compared with individuals without a disability. Other research has found that people with disabilities have more egalitarian beliefs and greater interest in public health care than the general population (Gastil, 2000). However, existing research on the political and policy attitudes of people with disabilities has almost entirely relied upon quantitative analyses of closed-ended questions. One exception was Gastil’s (2000) analysis of how people with disabilities felt their disability affected their political beliefs. This research found that 45% of a sample of New Mexicans with disabilities said their disability affected their political views, and many expressed concerns about losing their benefits, a general concern about issues affecting all people with disabilities, or that disability limited their participation in the political process. Only 8% of the sample reported that their disability made them more inclined to embrace liberal political ideas.

Although people with disabilities register to vote at rates similar to the overall population, they are less likely to actually vote (Powell & Johnson, 2019). Lower turnout rates are partially attributable to illness- or disability-related difficulties with voting (Pew Research Center, 2016), which is also supported by the positive relationship between self-rated health and turnout (Pacheco & Fletcher, 2015). Despite the passage of the Help America Vote Act in 2002 requiring each polling location to be accessible to people with disabilities, people with disabilities continue to face barriers to voting. People with disabilities are more likely to have difficulties getting inside the polling place, reading or seeing the ballot, waiting in line, and understanding how to vote or how to use the voting equipment (Schur et al., 2017). These barriers contribute to social exclusion by reducing the ability of people with disabilities to shape society through voting. Relatively low voting rates among people with disabilities may also be related to lower levels of political knowledge, attentiveness to the news, and negative perceptions of government (Powell & Johnson, 2019).

Despite being less likely to vote, some evidence suggests that people with disabilities may be more engaged in other political activities such as attending a demonstration or donating to a candidate compared with nondisabled individuals (Mattila & Papageorgiou, 2017; Powell & Johnson, 2019). However, other evidence suggests that people with disabilities have lower levels of participation in nonvoting political activities (Schur & Adya, 2013). Nonetheless, people with disabilities desire to have their viewpoints understood by policymakers despite facing barriers to voting and political participation. This study offers a crucial insight into the health policy perspectives of this population by allowing participants to express their viewpoints in their own words.

The research questions for this study were as follows:

RQ1: What are the health policy perspectives of people with disabilities?

RQ2: How are these perspectives influenced by their perceived social positions with regard to stigma and exclusion?

We used an open-ended question to assess both the specific health policy needs and viewpoints of people with disabilities in their own words, while more general perspectives on political representation and inclusion emerged from the data. This study makes an important contribution to the understanding of the political and policy viewpoints of people with disabilities, as previous research in this area has been almost entirely quantitative, with closed-ended or narrow questions. Our research offers an in-depth analysis of these viewpoints in their own words, giving voice to a population that often experiences barriers to political participation.

Method

This study was part of a larger project using mixed methods (interviews and surveys) to understand the health insurance and health care experiences of working-age adults with disabilities. In the larger project, interviews were initially conducted to inform survey content. Given the interviewees’ interest in responding to a question about policy, the authors decided to also include the question in the subsequent survey. The study described here utilized a qualitative research methodology to explore the health policy perspectives of people with disabilities. We used a conventional content analysis approach, where themes were derived inductively from the data (Hsieh & Shannon, 2005). Data from a national online survey, the National Survey on Health and Disability, and two sets of telephone interviews were utilized. Both the survey and interviews asked participants the question: “What would you like policymakers to know about access to health insurance or health care for people with disabilities or chronic health conditions?” The question was the last item on the survey and the last question asked of participants during interviews. Although the interviews asked additional open-ended questions of participants, this question was topically unique, the last question posed, and readily stood alone. Survey and interview responses to this question were treated as equivalent in this analysis because the research team found that the responses were similar across the two modalities.

Sample

Participants for interviews and the survey were between the ages of 18 and 64 years and were recruited via more than 60 national disability and chronic disease organizations. These organizations distributed a call for participants via email, social media, newsletters, conferences, and so on.

Interview Data Collection

Telephone interviews were conducted in the spring of 2017 and 2019. An interview protocol approved by the University of Kansas Institutional Review Board (IRB) consisting of six open-ended questions was used to facilitate interviews, including the question of interest for this study. We selected interviewees from a pool of people who expressed interest in participating; provided basic demographic information including gender, age, race/ethnicity, state of residence, employment status, and health insurance type; and self-reported having one or more types of disability. Interviewees were selected to ensure diversity of disabilities, geographic locations, gender, race/ethnicity, and age and interviews were conducted until data saturation was achieved. Verbal informed consent was obtained from interview participants, a standard practice approved by the IRB, and the informed consent document was mailed or emailed to interviewees. All interviews were recorded and transcribed.

Survey Data Collection

The national survey was fielded for 4 months in 2018 (Hall & Kurth, 2019) with a sample size goal of 1,200. Those interested in completing the survey were provided with a web link that took them first to a survey screening item, “Do you have a physical or mental condition, impairment, or disability that affects your daily activities OR that requires you to use special equipment or devices, such as a wheelchair, walker, TDD [telecommunications device for the deaf] or communication device?” People who answered affirmatively were invited to complete the full survey. As part of the demographics section of the survey, respondents were asked about their specific conditions, which were then grouped into several broad disability categories. In addition, to maximize inclusion across disabilities, survey respondents could take the survey online (accessible to screen-readers), via telephone by calling a toll-free number, or with the assistance of a proxy. The survey instrument and informed consent procedures were approved by the University of Kansas IRB. Informed consent was obtained before respondents could proceed and take the survey, and they were able to download a copy of the consent form after agreeing to participate.

Data analysis

Interview transcripts and open-ended survey responses were pooled then thematically coded using NVivo software. This study used a conventional content analysis approach, where instead of identifying themes a priori, themes and coding were guided by the data and developed inductively (Hsieh & Shannon, 2005). One member of the interdisciplinary team conducted the initial coding and analysis. First, they carefully read through each transcript and response, taking note of recurring ideas and statements within the data. Second, they openly coded approximately one quarter of the interview and survey responses, after which they decided on a coding protocol based on the subjective importance and the number of instances of each code. After this, the entire set of data was coded using this coding protocol, with additional codes added as needed for novel responses. The entire research team then reviewed the resultant themes to determine which would be selected for final inclusion based upon the number of responses in each theme as well as substantive relevance and importance. Finally, the research team collectively chose representative quotations from each theme. Although responses from two different modalities were pooled in this analysis, each theme was found in both the survey and interview data with no major differences in content across the two data sources.

Results

A total of 1,246 individuals completed the survey, with 484 (38.8%) respondents answering the question of interest for this study. Telephone interviews were conducted with 35 individuals, with all interviewees responding to the question. Demographics for the two samples are provided in Table 1. Both samples consisted of individuals representing a wide range of disability types, including chronic illnesses or diseases (43.9% and 45.7% of the survey and interview sample, respectively), neurological conditions (32.4% and 26.5%), mental illnesses or psychiatric disabilities (29.7% and 44.1%), physical and mobility conditions (29.7% and 35.5%), intellectual or developmental disabilities (12.7% and 24.5%), and sensory conditions (6.2% and 14.9). Approximately 40% and 65% of the survey and interview samples, respectively, were currently employed (part-time or full-time), and both modalities included people with a range of private and public health insurance types, as well as uninsured individuals. While we did not gather income and education information from interviewees, our survey sample consisted of approximately 44% low-income individuals (below 138% federal poverty level [FPL]) and 30% of participants had a college degree. It is important to note that survey responders and nonresponders to the question of interest did not differ significantly on most demographic characteristics; those who responded to the optional question were more likely to be male and to report lower incomes.

Table 1.

Participant Demographics.

Demographic characteristic	Survey sample (n = 484)	Interview sample (n = 35)
Age in years, mean (SD, range)	42.8 (13.3, 18–62)	42.7 (13.6, 20–64)
Gender, %
Female	50.0	50.0
Male	46.5	35.3
Other	3.4	14.7
Race/ethnicity, %
White Non-Hispanic	67.8	57.2
Black Non-Hispanic	6.4	17.1
Other Non-Hispanic	21.2	14.3
Hispanic, all races	4.6	11.4
Self-reported disability type,^a %
Chronic illness or disease^b	43.9	45.7
Neurological^c	32.4	26.5
Mental illness/psychiatric^d	29.7	44.1
Physical/mobility^e	29.7	35.3
Intellectual/developmental^f	12.7	24.5
Sensory^g	6.2	14.9
Marital status,^h % married	25.1	—
Sexual orientation, % LGB	10.5	22.9
Employment status, %
Full-time	16.8	30.0
Part-time	23.7	34.7
Not employed	59.5	35.3
Income,^h % below 138% FPL	43.8	—
Education level,^h % with college degree	29.5	—
Geographic regionⁱ
South	37.1	26.5
Midwest	25.7	11.8
West	23.7	29.4
Northeast	11.9	32.4
Territories	1.7	0.0
Insurance coverage type,^j %
No insurance	7.8	14.3
Employer-sponsored	34.0	34.3
Medicaid and/or Medicare	64.5	54.3
Marketplace	6.5	8.6
Other (TRICARE, IHS)	5.4	5.7

Notes. IHS = Indian Health Service; FPL = federal poverty level; LGB = lesbian, gay, bisexual; COPD = chronic obstructive pulmonary disease; ADHD = attention deficit hyperactivity disorder.

Respondents self-reported their disability or chronic health condition in their own words, which were categorized into six types by the authors. Total does not equal 100% due to respondents reporting more than one disability or health condition. ^bChronic illness or disease category includes conditions such as cancers, diabetes, COPD, Ehlers-Danlos syndrome, cardiovascular disease, and HIV/AIDS. ^cNeurological category includes conditions such as multiple sclerosis, cerebral palsy, spinal cord injury, Parkinson’s, spina bifida, ADHD, traumatic brain injury, paraplegia, quadriplegia, epilepsy, and stroke. ^dMental illness/psychiatric category includes conditions such as bi-polar disorder, schizophrenia, major depression, disassociate identity disorder, and anxiety. ^ePhysical category includes conditions such as muscular dystrophy, achondroplasia, osteoporosis, arthritis, limb loss or amputation. ^fIntellectual or developmental category includes conditions such as Down Syndrome, Fragile X syndrome, autism spectrum disorder. ^gSensory category includes conditions such as deafness/hard of hearing, blindness/low vision and/or partial blindness or deafness. ^hData not collected from interview participants. ⁱBased on U.S. Census geographic regions (https://www2.census.gov/geo/pdfs/maps-data/maps/reference/us_regdiv.pdf). ^jInsurance coverage type does not total 100% due to respondents reporting coverage from more than one type of insurance.

Five key themes emerged regarding the health policy perspectives of people with disabilities. These themes were consistent across survey and interview responses. First, people with disabilities feel that access to health insurance and health care is critical for their ability to participate in society. Second, participants felt that politicians did not understand or prioritize the needs and experiences of people with disabilities. Third, participants used a variety of arguments to express why politicians and society should care about people with disabilities. Fourth, participants framed access to health care as a human right or a moral imperative. Fifth, participants expressed viewpoints regarding the Affordable Care Act (ACA), which were largely positive.

Access to Health Insurance/Health Care Is Critical for Participation in Society

Participants expressed that access to affordable health insurance and health care is critical for social inclusion and community participation for people with disabilities. In particular, participants emphasized the connection between access to health care and the ability to “contribute to society” and work. For example, one participant stated,

Access to healthcare and the ability to maintain employment go hand in hand. But if health care is not affordable . . . the purpose is defeated and persons with disabilities are set back in attempts to participate in society.

Others emphasized their desire to work to avoid reliance on public assistance programs. Some framed access to health insurance as essential for national economic productivity, whereas others expressed a personal desire to avoid relying on public support. One woman said,

Having good, affordable health insurance and access to health care allows those of us with disabilities to remain healthy and productive members of society. It is important that health services remain accessible for us—but rising costs of insurance will cost our nation in terms of loss of productivity and poor outcomes for those who can’t afford insurance.

Another participant with employer-sponsored insurance commented that

If I don’t get the medication, I can’t work, then I’m back on the state paying for everything. . . Sometimes my husband says, “Just get back on disability and let the state pay for everything.” But I don’t want that. I like the fact that I don’t have to have the state pay for me. But at times it actually would be better for me to do that.

Participants wanted policymakers to understand that access to adequate health care and health insurance is necessary to enable them to work, otherwise they are forced to rely on public insurance and income sources such as Social Security. One issue in particular is the lack of private health insurance coverage for services such as transportation and long-term services and supports to assist with everyday activities. As one participant with Medicaid coverage noted,

Many people with disabilities can work and want to work, but they need to keep Medicaid. It’s not because they want free health insurance, it’s just that other insurance does not cover the personal care and some other things like transportation to the doctor.

Other respondents noted that work is closely tied to personal and social identity. As a result, lack of access to adequate and affordable health care and health insurance limits the ability of people with disabilities to self-actualize and to fully engage in society. One woman, who worked in the disability sector, wrote,

I am not so [disabled] that I can’t work. I have been working for 3+ years and I want to work the rest of my life. It really hurt me that my boss just suggested I apply for disability benefits. I have the ability to work and want to work, and he did not recognize that. . . . Many of the people I helped had severe developmental disabilities but also expressed to me a strong desire to work. Most people want to work—your work affects your identity (how you view yourself and how others view you) and shapes your ideas on personal dignity.

Policymakers Don’t Understand People With Disabilities

Participants expressed beliefs that policymakers do not understand people with disabilities or disability issues. Some felt that policymakers do not recognize people with disabilities as humans, but rather speak of them as social burdens. One man stated,

I hear politicians on the TV talking about me as if I am the cause of the budget deficit. . . . They seem to lump us into a group of people—well, not people: “You’re the budget deficit, you’re this, you’re that,” instead of saying “these are people who need care.” Maybe the number one thing, then, is an attitude change. You’re not dealing with line items on a budget; you’re dealing with what real people need.

Other participants felt that policymakers lack an understanding of the lived experience of having a disability. As a result, some participants felt that health care and disability policy fails to meet their needs because policymakers do not have any direct experience using systems such as Medicaid, Medicare, or Social Security. They expressed that policymakers lacked a personal, humanized understanding of these systems which limited their ability or willingness to address problems within these systems. One woman commented,

They [policymakers] need to talk to people with disabilities to know what they experience on a daily basis. There’s a lack of knowledge about what life is really like for people with disabilities.

Another participant with Medicare and Medicaid coverage noted,

I really think that policymakers and politicians claim to listen to their constituents, but I think that when it comes to Medicaid and Medicare, it’s safe to say that the people who are enacting the policies have never actually used those benefits themselves. I think that the first thing I would ask for them to do is to stop thinking about things through policies and papers and put themselves in that situation and actually physically imagine, could they live with that?

People With Disabilities Matter

Participants commented on why policymakers or society in general should care about people with disabilities or about disability issues. These comments reflect both explicit and implicit perceptions that society and policymakers do not care about people with disabilities. Participants used a variety of arguments as to why people with disabilities matter, including the ideas that no one chooses to be disabled and that everyone has the potential to become disabled. For example, one man with autism expressed,

Autism and other pre-existing conditions . . . [are not] a reflection of an individual’s moral character like it has been hinted at in some health care debates. Like some people say, “Well, individuals with more should have to pay more.” It’s not the same as people with bad driving records having to pay more. People don’t choose to have most of the medical conditions that cause health insurance premiums to go up and that is important to keep in mind.

Another participant argued,

Diseases and injuries do not discriminate and can happen to anyone at any time, so the better health coverage we have as a society, the better people we are as a whole because all of us wish the same things: for our loved ones and ourselves to have healthy lives.

While some argued that people with disabilities should matter to policymakers because they want to contribute to society, often through paid employment, others expressed that people with disabilities should inherently matter to policymakers as humans. In the words of another woman with employer-sponsored insurance coverage:

Quit pitying us . . . That’s not why you do this. Do this because we are human beings with inherent dignity and worth . . . . Yes, there’s going to be a cost, but . . . if you invest in me, I can then be a productive citizen. I shouldn’t have to choose between Medicaid and working.

Another woman stated,

What legislators need to think about is what they would want for themselves or their families if they were to have an accident or become ill. People on disability also face prejudice and are treated poorly because they can’t work or don’t work an average job.

Health Care Is a Human Right

Participants expressed the opinion that access to affordable health care is a human or civil right, or that unequal access to affordable care is a moral issue. Numerous respondents desired a universal health care system, and very few respondents expressed that public health insurance should be reduced. One man with Medicare and Medicaid coverage stated,

Access to health care is a fundamental right of US citizens and needs to be made available to the disability community and the community at large. Without adequate access to health insurance and health care, the cost to society increases dramatically.

Another woman pointed out,

Policymakers already know that restricting access to health care has outcomes that range from loss of income to loss of life . . . . True access means that all citizens, regardless of their ability to pay, have access to the same range of services. Like water and an unpolluted environment, health services are essential to “life, liberty, and the pursuit of happiness.”

Finally, in regard to health care being a human right, one man expressed,

I believe health care is a right and a person should not be worried about whether or not they will go bankrupt because they need care for their illnesses. I have had so many roadblocks to treatments that could help because of all the rules and financial requirements to get that help. Health care needs to be covered for all Americans without exception.

The ACA

Overall, participants expressed support for the ACA, although many reported that they still struggled with health care costs. In particular, health insurance premium subsidies, coverage for preexisting conditions, and Medicaid expansion were important to respondents. Although participants expressed gratitude and praise for the ACA, they were also fearful of changes to or elimination of the ACA or its components. These comments highlight the personal impact of the ACA on many people with disabilities, who expressed emotions such as gratitude for the ACA as well as fear that ACA features will be removed. A woman with Marketplace-purchased insurance said,

Please, please let policymakers know that we need access to health insurance–do not end the Affordable Care Act or the subsidy for our health insurance premiums. Because I had breast cancer last year, I am uninsurable through private insurance and my employer no longer offers health coverage because they cannot afford it. The Affordable Care Act [Marketplace] is the only place I am able to get health insurance coverage.

Another woman with employer-sponsored insurance expressed that she “changed jobs—and left work I was passionate about—because I feared changes to the ACA. My preexisting condition label is more disabling to me than my disability.” Yet another woman with Marketplace-purchased insurance coverage who struggled with her preexisting condition label said,

I would have died without the Affordable Care Act. Before the preexisting condition clause went into effect, I paid $850 a month for health insurance and the company denied every claim due to my preexisting health condition, so I also paid for all of my health care out of pocket in addition to the $850 monthly premium. I am thankful the Affordable Care Act got rid of the preexisting condition clause. My coverage is now better, but still not great. It is disappointing to me that health insurance will not pay for services I need to function 100%.

In regard to ACA provisions, a man with Medicaid coverage said he was “grateful for Medicaid expansion in my state. I got it when I was out of a job and had no coverage and have been able to keep it.”

Discussion

Our study demonstrates the interconnection between disability stigma and marginalization, health policy, and politics. As a marginalized population, people with disabilities felt that policymakers fail to understand or prioritize their needs and viewpoints concerning health care and health insurance policy. This research fills a critical gap in existing literature by highlighting the health policy views of people with disabilities in their own words, ultimately revealing both their health policy viewpoints and the underlying perceptions of marginalization and stigma. These findings are particularly important and relevant for policymakers because people with disabilities often face barriers to political participation (Schur et al., 2017), and their voices and opinions are often underrepresented in policy discussions. The lives and livelihoods of people with disabilities are strongly affected by health policy, and they are key participants in programs such as Medicaid, Medicare, and Social Security, making them an important source of information on the functioning and outcomes of these programs.

While we have written elsewhere about other specific barriers to health care for people with disabilities (Hall et al., 2017, 2018, 2019, 2020), one key finding across our studies is the often-problematic connection between health insurance and employment. As noted by participants in this study, employment is a crucial component of social inclusion and identity, but people with disabilities are often forced to choose between adequate health insurance and work. For many people, access to health care, including prescriptions, specialist visits, long-term supports and services, and transportation, is required to maintain their ability to work. However, high private insurance costs (including premiums, copays, and deductibles) and inadequate coverage force many people with disabilities to rely on Medicaid, which often limits their opportunities for paid employment. The qualitative insights from this study illuminate some of the potential reasons why less than 35% of working-age people with disabilities were employed in the past year (Kennedy et al., 2017) and show how the opportunity to work is personally important for people with disabilities. As noted by several participants, allowing for more opportunities to work while maintaining adequate health insurance coverage would empower people with disabilities to more fully participate in society, fulfill self-actualization needs, contribute valuable skills and diversity to the workforce, and reduce overall costs by contributing more to taxes and to the economy in general.

This study also highlights feelings of marginalization by people with disabilities stemming from societal stigma as well as a perception that policymakers do not care about their well-being or health policy needs. As noted in previous research, people with disabilities are labeled, stereotyped, and socially separated, and they suffer from status loss and discrimination (Green et al., 2005). Many of these elements appeared to directly and indirectly influence our participants’ viewpoints on politics and health policy, even though our survey and interview prompts did not explicitly ask participants to share these perceptions. This finding may reflect the centrality of feelings of marginalization and stigma for some people with disabilities when thinking about health policy. Participants repeatedly stressed desires to “contribute” to society through paid employment, which may serve as an attempt to rebuke stereotypes of people with disabilities as noncontributors or “freeloaders” as well as a desire for the social inclusion and social value placed on Americans who work. They also directly articulated reasons why people with disabilities should matter to policymakers and to society and expressed perceptions that their experiences and needs are invisible to policymakers. These implicit perceptions of social disinvestment may further limit social participation and inclusion (Hammel et al., 2008).

These study findings support previous research suggesting that people with disabilities favor a strong role of government in health care (Schur & Adya, 2013). Few respondents in our study expressed viewpoints supporting a reduced role of government or a reduction in spending on health care. While our research did not involve a comparative element, our results seem to align with previous work that found that people with disabilities support more egalitarian principles and are more likely to prefer a government role in health care than the general population (Gastil, 2000). Our participants called for expansion of health care coverage and reductions in costs to individuals, with support for many ACA provisions and universal health care coverage. This qualitative research also highlights how people with disabilities have been directly and personally impacted by the ACA, and participants were strongly in support of maintaining or expanding features such as Marketplace subsidies, Medicaid expansion, and protections for preexisting conditions.

Study Limitations and Conclusion

This study has several limitations. First, interview and survey participants were recruited from disability- or condition-related organizations and therefore may overrepresent the viewpoints of individuals who are active in such organizations. These individuals might have greater levels of engagement in disability- and health-related issues. Although efforts were made to recruit a diverse sample, participants were self-selected and results cannot be generalized to all Americans with disabilities. In addition, approximately 60% of survey respondents did not answer the question of interest, which was optional. It is also likely that those who answered the question had stronger viewpoints on health policy and policymakers, thereby possibly skewing the results. Finally, disability is one of many intersecting axes of marginalization and oppression, and it is likely that the experiences and viewpoints of people with disabilities vary by race/ethnicity, gender, sexuality, socioeconomic status, and other social groupings. While it was beyond the scope of this study to analyze the heterogeneity of health policy viewpoints across these intersections, such an analysis is an important goal for future research.

Because people with disabilities have diverse health care needs and often experience a relatively small margin of health, barriers to care can quickly result in adverse outcomes and additional long-term costs (Hall et al., 2019). If insurance coverage and care are adequate to meet this population’s needs, it is likely also adequate to meet the needs of the larger U.S. population. Thus, policymakers may wish to take heed of these messages from people with disabilities both because they express the viewpoints of an important but marginalized population but also as a pathway to improving health care and health insurance for all Americans. In addition, our research suggests that policymakers may be able to play an important role in enhancing social inclusion and reducing stigma among people with disabilities through policies that promote adequate health care coverage and employment for this population. Finally, policymakers may wish to engage more directly and positively with constituents with disabilities, as our results suggest that they feel excluded from the political process and marginalized by policymakers.

Footnotes

Acknowledgements

The authors would like to thank Dr. Adele Shartzer from The Urban Institute for development of the survey weighting methodology.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work and the National Survey on Health and Disability is part of The Collaborative on Health Reform and Independent Living (CHRIL) funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR, grant number 90DP0075-01-00).

ORCID iD

Noelle K. Kurth

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