Disability stories: personal perspectives of people with disabilities on navigating the U.S. health system

Abstract

Americans with disabilities and chronic illness or injury tend to be in poorer health, use more health services, and pay more for healthcare than those without disabilities. Consequently, their lives can be profoundly affected by federal and state health policies. The concerns of this population do not figure prominently in national health policy discourse and related public health and health services research efforts. This study sought to give voice to the lived experiences of people with disabilities as they navigate a fragmented U.S. healthcare system. We interviewed 30 adults who self-identified as having a disability and spoke or otherwise communicated in the English language. Directed content analysis was used to examine words and phrases in professionally transcribed documents by experienced qualitative researchers. We report and discuss four themes from the perspective of the participant, presented in thematic statements, related to vocation, finances, stressors, and advocacy.

For people with disabilities, access to healthcare and the means to pay for it can be a life-or-death issue. Consequently, health insurance coverage is critical for this population. But for nonelderly Americans with disabilities, the need to obtain and maintain health insurance coverage can drastically constrain their life choices about school, work, family, and community. In this qualitative study, we ask a select group of advocates with disabilities to describe the ways the U.S. health system has affected their lives. Throughout this paper, we will employ the “people first” language endorsed by the early leaders of the independent living movement in the U.S. We recognize that there are now differing schools of thought about how people with disabilities might choose to identify themselves, but we choose to honor the terms used by most American disability advocates, including our study subjects.

A very brief overview of the U.S. health system

Nearly all industrialized countries offer some form of government-sponsored health insurance for all their residents (Thompson et al. 2011), but the U.S. healthcare system is comprised of a complex and uneven patchwork of public and private payors, and fails to insure roughly 11% of its nonelderly residents (Finegold et al. 2021). A detailed review of the confluence of economic, political, and social evolution of this idiosyncratic system is beyond the scope of this article, but for our purposes, its critical feature is the reliance on employer sponsored private insurance to cover U.S. workers and their families (Kennedy and Wood 2018). Nonelderly Americans who do not work (including many adults with disabilities), and those who work for businesses that do not provide insurance for their employees, may opt to purchase individual coverage from private insurers, but the cost and quality of such coverage varies dramatically, and federal subsidies are limited to those with low incomes. Many therefore receive health coverage through the two largest federal insurance programs in the U.S., Medicare and Medicaid.

The Medicare and Medicaid programs were both established in 1965 through revisions to the Social Security Act, but the two programs have very different financing schemes and eligibility criteria. Medicare is a single-payer program administered by the federal government and funded by mainly payroll taxes paid jointly by employers and workers. The Medicare program was originally intended for retired adults (aged 65 or older) and their spouses, and funded by the Old-Age and Survivors Insurance Trust Fund. Program eligibility was expanded to workers with disabilities deemed eligible for Social Security Disability Insurance (SSDI) in 1973. Medicare provides mandatory coverage of hospital care (Part A), and optional coverage of physician services (Part B) and prescription drugs (Part D).

Medicaid, in contrast, is a program jointly funded by the states and federal government, and administered by the states. Medicaid eligibility is limited to low-income populations, and the specific income and asset thresholds vary significantly among states. Medicaid programs cover hospital and physician services, but in contrast to Medicare, they also cover nursing home care, personal assistance services, wheelchairs, lifts, and supportive housing services. The Supplemental Security Income (SSI) program, established in 1974, is a needs-based disability program that provides modest financial assistance to adults deemed unable to engage in substantial gainful activity (i.e. wage labor) and to children with disabilities. At present, 35 states and the District of Columbia automatically provide Medicaid coverage for all SSI recipients, but the remaining states require separate applications for each of these programs. Many states also use Medicaid funds to provide vocational rehabilitation and supportive employment services. Roughly 12 million individuals, known as “dual eligibles,” currently receive both Medicare and Medicaid benefits.

The Affordable Care Act of 2010 (ACA) attempted to rationalize the US health system, with some success (the proportion of the nonelderly population without insurance dropped from 18% in 2010 to 10% in 2015, though the proportion of uninsured is now creeping up again). The ACA prohibited private insurers from denying coverage to people with pre-existing health conditions, required all plans to cover “essential health services,” and established state-based health insurance marketplaces, with multiple plans and multiple price-points. The ACA also required all states to expand Medicaid eligibility to all adults with incomes below 133% of the federal poverty level, but the U.S. Supreme Court deemed this state mandate unconstitutional, and a number of states (all with Republican legislatures and/or governors) have opted not to expand program eligibility.

Health insurance, disability benefits, and workforce participation

In a post-ACA commentary for The New England Journal of Medicine, Kennedy and Blodget (2012) observed that many workers with disabilities applied for disability benefits (SSI and/or SSDI) primarily because of the associated health insurance coverage (Medicare or Medicaid). They described this phenomenon as Health Insurance Motivated Disability Enrollment (HIMDE), and hypothesized that improved access to private insurance and Medicaid under the ACA could reduce applications for SSI and/or SSDI and increase workforce participation for nonelderly adults with disabilities (Kennedy and Blodgett 2012). They further suggested that this effect could be identified by comparing application and work rates of adults with disabilities who reside in Medicaid expansion states, compared to those states which opted not to expand Medicaid eligibility. A handful of recent studies have compared workforce participation rates (Hall et al. 2015; Hall et al. 2017; Sevak and Schimmel Hyde 2021) or SSI enrollments (Anand et al. 2019; Chatterji and Li 2016; Soni et al. 2017) in Medicaid expansion and non-expansion states, but results are inconsistent at this point.

While access to badly needed health coverage is a major motivator for those applying for disability benefits in the U.S., the situation is somewhat different in the U.K., Australia, and other countries with universal health coverage. Disability benefits in the developed world serve primarily to replace or supplement the earnings of people with disabilities. A common denominator in all these programs is an effort to restrict the number of individuals leaving the work-based economy and entering the need-based economy. Efforts to discourage the use of disability benefits vary from country to country, but most include strict eligibility rules, recurring eligibility determinations, and work or training requirements. There are stringent workfare programs in the UK and Australia meant to aggressively cull the disability benefits rolls; widespread and formidable administrative barriers in benefits administration; and in most places, a “poverty test” for beneficiaries (see also Garthwaite 2011; Kendrick, Ward, and Chenoweth 2017; Lewis, Dobbs, and Biddle 2013; Saffer, Nolte, and Duffy 2018). However, the U.S. is unique in holding disability beneficiaries’ insurance coverage hostage to their continuing program participation.

In this qualitative descriptive study, we interviewed 30 working-age adults and asked them about their experiences with work, health insurance, and healthcare policies. This was not a random sample, but rather a cohort of disability advocates familiar with, and sympathetic to, the goals of the independent living movement. They recognize the powerful link between public attitudes and policies and their capacity to maintain their health, obtain an education, work, and fully participate in their families and communities. These experts describe, in their own words, how current healthcare and health insurance policies impact their own health, work, and lives.

Organizing frameworks

Defining disability is no simple matter, yet interpreting data according to a pre-defined theoretical lens is essential for qualitative descriptive analysis (Sandelowski 2010). Definitions are widely contested and vary depending on the purpose of the inquiry, the political and economic interests of the group defining it, and place-based factors. In this study, we chose not to endorse a particular definition of disability, but to legitimize the life experiences of the individuals we interviewed who described themselves as having a disability. This post-positivist perspective affirms the unique knowledge persons with disabilities possess about the ways in which health policy affects them (Code 2006). National conversations about disability in the U.S. are conducted through one of three lenses as briefly described below.

The medical model

The dominant model of disability among clinicians and the general public is an individual, medical model that sees disability as a personal misfortune to be overcome through strength of character and appropriate medical intervention. Disability is seen as individual pathology or deviance from normal function, and is defined by a medical diagnosis that purports to tell an objective, scientific story about what it means to be disabled, whereby disability is a natural phenomenon. Under this model, disability is best ameliorated through charity and good will, rather than through structural change (Clare 2017; Kafer 2013). The goal of the medical establishment is to normalize function as far as possible, through treatment and rehabilitation, no matter the physical or monetary costs to the individual with a disability (Oliver 1996).

The economic model

Under the economic model, persons with disabilities are presumed unable to engage in gainful employment and are thus relegated to participation in the need-based economy. It is connected to the medical model in that only medical professionals may certify individuals’ level of disability and confirm that they are deserving of aid, acting as gatekeepers to SSI and SSDI. yet diagnosis is a notoriously poor predictor of function and employability, especially in an economy that is more centered around service and technology than manual labor (Russell 2001; Russell 2002; Stone 1986). Many persons with disabilities are willing and able to work, yet find access to needed social supports threatened when they seek paid employment. Furthermore, ableist prejudice and discrimination often prevent persons with disabilities from finding or keeping jobs which they would otherwise be qualified for (Russell 2001; Russell 2002).

The social model

The social model of disability is a reaction against these two models. It distinguishes between impairment and disability, where impairment is a limitation in physical or mental functioning, and disability is a social phenomenon brought about by an interaction between impairment and the social and built environment. The social model locates the problem of disability not in the individual’s impairment, but in the social and environmental obstacles that prevent full participation in community life (Oliver 1996; Kafer 2013). Disability rights activists and adherents of the social model often reject efforts to medicalize or cure their conditions, particularly efforts motivated by an ideology of pity (Clare 2017; Stramondo 2010). Disability rights activists do not wish to be cured; instead they seek the same civil rights afforded to those without disabilities.

While the social model of disability represents a major step forward in disability theory, it is not without its critics. Recent work in disability studies notes that the distinction between impairment and disability may not be possible to maintain, given that both impairment and disability are socially constructed. What counts as an impairment will vary across cultures and environments, just as disability is dependent on social and physical barriers specific to a particular time and place (Kafer 2013). The social model, as it stands now, is problematically dualistic. The embodied experience of disability is neglected in its analysis and is starkly separated from the social experience of disability. The naturalization of impairment under the social model absolves medicine and health policy from badly needed social and political critique (Hughes and Paterson 1997). It also politically marginalizes members of the disability community who do seek medical intervention for their conditions, particularly those with chronic illnesses, pain, and fatigue (Oliver 1996; Wendell 2001).

The political model

Some offer the political model of disability as a friendly amendment to the social model whereby the political model denaturalizes impairment, treating it as socially and politically problematic in the same way disability is problematized by the social model. By problematizing impairment, it subjects medicine and health policy to social and political critique as factors strongly affecting people with disabilities. Thus, the political model is of particular interest to disability scholars in health policy. The aegis of the political model is not limited to health policy, but encompasses public policy in general and the ways economic, educational, and other policies shape people with disabilities lives’, for better or for worse (Bricher 2000; Hughes and Paterson 1997; Kafer 2013). It serves as a platform to critique existing models of disability, such as the medical and economic model, as politically motivated themselves. Questioning what it means to be categorized as disabled, and looking more closely at the policies that exacerbate the problems associated with disability status, promotes higher level thinking that can remove obstacles and thus, the “disability problem.”

In the course of this investigation, we found that individuals’ experiences were influenced by multiple, interacting models of disability. Our participants reacted to a healthcare system shaped and informed by the medical and economic models of disability, and pushed for recognition that their disabilities were social and political phenomena.

Materials and methods

A qualitative descriptive approach was selected for this qualitative inquiry in an attempt to stay close to the data and the voice of the participant (Colorafi and Evans 2016; Sandelowski 2000; Sandelowski 2010). The qualitative descriptive approach is preferred when little is known about a topic. To date there is a relative absence in the scholarly literature addressing the impact of health policy changes from the perspective of persons with disabilities.

English speaking, adult (≥18 years of age) participants with self-identified disabilities were recruited on the Collaborative on Health Reform and Independent Living (CHRIL) website. The CHRIL is a disability and rehabilitation research project funded by a U.S. Department of Health and Human Services grant. Institutional members include researchers from Washington State University (Spokane, WA), the University of Kansas (Lawrence, KS), and George Mason University (Washington, DC). Participants were given the option to write (≤500 words) or leave a voice mail message (≤five minutes) describing their experience as a person with a disability navigating the US healthcare system. Subjects were invited to participate in a recorded interview at one of four locations: the Association of Programs for Rural Independent Living Annual Meeting in Denver, CO; the Access Center at Washington State University in Pullman, WA; the Disability Action Center in Moscow, ID; or the National Council on Independent Living in Washington, DC. Interviews were conducted by the same female, graduate prepared interviewer who studied and was employed in disability policy. Interviews were audio and video recorded and lasted 30–45 min. In keeping with qualitative sampling procedures, IRB permission was sought to interview up to 40 participants. Informational redundancy, or the point at which no new data are found which contribute to the development of properties of a category (Glaser and Strauss 2017; Saunders et al. 2018), was reached after 30 participant interviews and thereafter recruitment stopped. Participants were given a $25 gift card and up to $300 in reimbursable expenses when they travelled to be interviewed.

After written, informed consent was obtained, the interview occurred in a quiet, private room. Participant interviews were professionally transcribed by 3Play Media, Inc. and video files were edited by AXS Lab Inc., a nonprofit organization whose purpose is to engage audiences to explore the disability experience using media. Transcripts were returned to participants for clarification and correction of content. Minor changes were made based on feedback received. The participant-corrected transcripts were uploaded to a shared drive where the research team accessed transcripts for analysis.

An important beginning step to qualitative descriptive analysis is coding, the process of assigning a descriptive label to chunks of text that assign meaning (Miles, Huberman, and Saldana 2020). Before coding began, our team of experienced qualitative researchers created a coding manual based on the models of disability previously presented, a review of the literature, and an initial read of the first three transcripts. All transcripts were read by a primary coder and first cycle coding, predominately focused on descriptive, In Vivo, and conceptual coding, was performed (Miles, Huberman, and Saldana 2020). Transcripts were re-assigned to a second coder until all transcripts were reviewed by at least two coders. The coding team met to discuss observations and codes. All members of the research team were involved in second cycle coding, as segments of data were grouped into themes and categories known as pattern coding. A great many codes collapsed into a smaller number of categories or themes, which are more inferential or explanatory in nature (Miles, Huberman, and Saldana 2020). These pattern codes helped us to draw conclusions about causes and explanations (e.g. financial strain and insurance), relationships (e.g. advocacy), and theoretical constructs (e.g. social model of disability).

When consensus was reached, original transcripts were imported into Dedoose (Stanford University, Palo Alto, CA) and re-coded accordingly by the senior coder. In an attempt to address data quality issues, several tactics advocated by Miles, Huberman and Saldana for generating meaning and testing findings were employed (Miles, Huberman, and Saldana 2020). These include noting themes/patterns, clustering, making metaphors, counting, analytic memoing, checking the meaning of outliers, weighting the evidence, and checking for researcher effect. Finally, findings were presented as thematic statements (Sandelowski and Leeman 2012) and illustrative quotations were deidentified and presented. Thematic statements are complete sentences that express a theme. The presentation of thematic statements is theorized to improve the clarity, accessibility, utilization, and practical import of qualitative findings and can be used to generate hypotheses for future work (Sandelowski and Leeman 2012).

The subsequent sections of this paper combine the research findings and discussion of those findings to maintain an uninterrupted storyline for the reader (Holloway and Wheeler 2010). Both JARS and SRQR (O’Brien et al. 2014) take this approach. Standards for reporting qualitative research (SRQR) were followed in the creation of this article (O’Brien et al. 2014). This study was reviewed and approved by the Institutional Review Board at Washington State University (#16925–001).

Findings and discussion

The purpose of this study was to document and share the personal experiences of people with disabilities as they respond to changes in the US healthcare system. Thirty persons with disabilities agreed to participate in this study (Table 1). Participants resided in the following states: Washington (n = 17, 57%), Idaho (n = 5, 17%), Colorado (n = 2, 7%), New york (n = 2, 7%), DC (n = 1, 3%), Virginia (n = 1, 3%), and South Carolina (n = 1, 3%). Disabilities were categorized according to the World Health Organization’s International Categorization of Functioning, Disability, and Health (WHO 2001). Six participants (20%) described a recent onset disability (e.g.: concussion and head injury, aging related pain management) and all others (n = 24, 80%) identified a long-term disability (e.g.: vision impairment, hearing impairment, cerebral palsy, mental illness). Findings are described and discussed in accordance with four themes (vocation, finances, stressors, and advocacy) under the heading of patient-centered thematic sentences.

Table 1.

Demographics.

Item	n (%)
Gender
Male	6 (20)
Female	24 (80)
Age
20–29	8 (27)
30–39	7 (23)
40–49	6 (20)
50–59	4 (13)
60–79	5 (17)
Reported disability
Mobility/physical	7 (23)
Spinal cord	5 (17)
Head injury	2 (7)
Vision/hearing	4 (13)
Cognitive/learning	2 (7)
Psychological	5 (17)
Invisible	9 (30)

Total >30 due to multiple disabilities per participant.

Thematic Statement 1: I want to work, but disability benefits and public health insurance make it difficult to do so.

The majority of participants in this study (n = 25, 83%) were employed as advocates in the independent living community and five others (17%) worked in an unpaid capacity (Table 2). Those in the study with severe disabilities who qualified for benefits found it difficult to find employment outside of the disability community (Garthwaite 2011; Humber 2014; Russell 2002). Instead, they expressed a desire to volunteer with disability groups and organizations.

Table 2.

Employment and insurance characteristics.

Item	n (%)
Employment
Full time	20 (67)
Part time	3 (10)
Not employed	7 (23)
Student	6 (20)
Employed as an advocate	25 (83)
Insurance
Employer/school sponsored	16 (53)
Parent	3 (10)
State exchange	2 (7)
Medicare/Medicaid	3 (10)

It is incumbent on the person with the disability who wishes to be employed to learn the complex web of rules and policies governing employment, disability, and health insurance benefits in the US healthcare system. Learning to navigate this administrative quagmire is part of the hidden “administrative labor” of disability that goes unrecognized and unpaid (Katzman and Kinsella 2018). Participants described the complexities involved in learning about the variety of ways in which policy impacts their ability to work and maintain health insurance coverage.

I applied for disability. I was denied the first time, because I had too much money in my savings. I had like $6,000, and you have to have a maximum of $2,000. So, I ended up having to spend my money in order to go on disability.

I receive SSDI. I had to go through the whole process of being eligible for it, and then being certified, and recertified. And because of the fact that I had worked in an upper-level financial capacity, I’m at the upper level of benefits. That excludes me from receiving [health insurance from] Medicaid.

I can’t earn over, I think the last number was $1,220 a month, because it disqualifies me from getting disability benefits. So it’s something that I always need to be careful about.

Participants unanimously expressed a desire to work but many observed that the complex nature of SSI and SSDI benefits and particularly income and asset limits, made it difficult to do so. One participant remarked, “The system doesn’t provide me the wherewithal to eventually, which is my goal, to eventually get away from disability … it doesn’t really reward effort of sorts.” Another explained,

SSI has stopped me from working and I have been trying to fight it. Every year I get a new case worker. And every case worker tells me something different. One year I got told, yeah, you can make up to $1700 a month, so I got a job. And I got a letter that they were taking my SSI away. Then the next case worker goes, you can only make $68. Well, the case worker I have right now says $89. No one is clear.

Researchers have documented the ways in which the employed have a difficult time sustaining employment due to deteriorating health or workplace discrimination. Even when people with disabilities are employed, they are more likely to report contingent employment and lower salaries than their peers without disabilities (Terry et al. 2017). For those whose conditions improve, it is burdensome to find employers who are cognizant of disability accommodations needs (Humber 2014). As such, many people within the disability community find it easier to work for and within disability organizations that reinforce the independent living philosophy.

Finding employment is not the only barrier people with disabilities face. Once employed, people with disabilities express being overwhelmed with the amount of information regarding SSI and SSDI benefits. People with disabilities have described the hidden administrative labor of managing benefits as “like having another job” (Katzman and Kinsella 2018). Applying for disability benefits is a multistage process which can take months or even years. If people with disabilities are able to navigate through the Web of information and they are able to apply, there is no guarantee that they will qualify for benefits. In fact, many claims are denied for simple clerical errors, requiring them to start the process all over again. A participant described the negotiation that was required for her to maintain both employment and disability benefits,

So, if you’re working, you’re probably just breaking even because there are still restrictions on that. If you’re on SSI, you know how much you can make. And if you’re on SSDI … you have to worry about the threshold. So, if that threshold goes over whatever it is – I think it’s $1190 – you’ll lose your benefits … you’ve already talked to your boss and said “I can only work this many hours” – and you have to start all over again.

In summary, the relationship between paid employment, disability benefits, and health insurance is complex and drives fundamental decisions about the ability to fully participate in the workforce.

Thematic Statement 2: Because of my low income and costly healthcare needs, I live with constant, unrelenting, financial pressure.

In part because the low-paying jobs that participants held, the pressures to meet financial obligations were extreme. Participants who worked full time in grant-funded agencies, or in part time or unpaid capacities were often not eligible for employer-sponsored health insurance, further exacerbating financial strain. Special disability programs which provided additional income support were hard to qualify for and still left significant gaps in the monthly budget (see for instance Russell 2001; Russell 2002; Saffer, Nolte, and Duffy 2018).

The ability to gain access to disability and health insurance is essential to the ability of a person with disabilities to live with financial independence (Saffer, Nolte, and Duffy 2018). This participant describes the constant, pervasive, financial anxiety that people with disabilities live with: “If I had a huge health crisis … I would just be paying forever, because I don’t have those kind of resources. But it would pretty much, you know, it could devastate me, bankruptcy, probably.” They constantly weighed the costs of services when making decisions to obtain care and to balance their financial lives; “I was sick one day, and I just had to go to … a little emergency care center at a hospital … and just pay it off over time.” Others described the juggling act that is required to manage their budgets:

I pretty much couldn’t work anymore. I’d run through every bit of savings I had … and qualified for Medicaid for that [surgery]. But the financial impact– being 29 and needing these major surgeries that could be life-altering, that would enable me to breathe again, eat again, see and have visual acuity without pain, I was willing to pay … So definitely, my medical care was over $100,000, and some of it was covered by insurance. A lot of it, I’m going to estimate 40% of it, was not. And so being able to afford my diagnosis, and to live, and to buy groceries, and my medicine was very difficult.

My neighbor … tells me that he stopped taking some of his medication. This is a man who has worked his whole life, put everything in to take care of himself and his family, and is now at a point where with disability he can’t work anymore. He’s been working his whole life … paying his taxes. But now he stopped taking medication because … [he] can’t afford $700 a month. He is literally shortening his lifespan so his wife doesn’t go without food. That’s where we are as a nation.

In order for me to get the medication and the treatment that I need, I have to have a job with good health insurance. There’s no way in the world that I would be able to pay for medication. I have to work for a company that offers health insurance and will cover my medications.

I don’t have a 401(k) … so I try to invest in things that will come back to me in the long run. So, for example, when I’m looking at my paycheck and then after I pay all my bills, it’s like, what can I save this for? Because the unexpected things … I know they’re going to happen at some point.

Financial pressure on a day-to-day basis was described as “stressful, for sure” and thinking about retirement was described as “a huge issue”. One participant commented, “I already cashed out all of my retirement to pay for surgeries, but there was just no other way around it. It’s really unfortunate that major health issues and poverty go hand in hand.” Others explained, “I think about the future, but the problem is, OK, like life insurance and all this stuff, at this point, I can’t afford it. I really, really, can’t afford it,” and “I can’t retire. I’m on working Medicaid. And without it, I won’t be OK. I will never get to retire. And that’s the current system” and “I do want to be able to plan for retirement, although I don’t think that’s ever going to happen. I don’t think I can afford to retire.”

In part because planning for retirement was so stressful, several participants expressed the sentiment that “when you plan, God laughs” and that they simply had to “play it by ear.” One participant confessed that “I try not to think about it, and I try not to dwell on it. I try to stay healthy. Because I don’t feel like I have a lot of choices” another saying, “I try not to lose sleep over it.” Research in disability studies confirms the correlation between disability and poverty, though there is little literature at present on the difficulties of saving for retirement while living with a disability (see Russell 2001; Russell 2002; Ball et al. 2006; Saffer, Nolte, and Duffy 2018 for analysis of the link between disability and poverty).

In summary, it was nearly impossible for the participants to think about saving for retirement; “When it’s hard enough to keep a savings account, the idea of retirement just doesn’t seem important.” The financial pressures of living with a disability now, and in retirement, were described as nearly insurmountable.

Thematic Statement 3: As a result of navigating the US healthcare system as a person with disabilities, I live with a multitude of life stressors.

Each participant in this study described a litany of distress they experienced in day-to-day life, the most common of which are documented in Table 3. In particular, people with disabilities were frustrated with the administrative barriers put in their way. One participant, who in addition to her own disability and her work advocating for people with disabilities, also cared for her mother, observed,

They sent her yearly renewal to the wrong address, so no fault of her own. She lost her Medicaid. It took us 90-days to get it back. It was very difficult. We had to ask favors. We had to ask the home healthcare agency to work on faith and keep taking care of [her]. We had to ask the doctor for the same. And we got very lucky that the pharmacy she used didn’t get notification that she’d lost Medicaid.

The system is flawed. [Many of our clients] are blind to the point that they cannot read a 12-point font. They need large print or they need a phone call notifying them that it’s time to renew their Medicaid. They would call me up go, I’m getting a lot of mail. I don’t know who it’s from. Can you please come look? I go over there. I read their mail. They’ve lost Medicaid. All it would have taken from Medicaid is a phone call. This should be a no brainer. I think it’s about $1,000 to get [an automatic dialing system]. And I’m sure that the $1,000 a year for an automatic dialing system would be far cheaper than having to redo all these cases constantly….Why can’t we do this?

Table 3.

Description of common stressors.

Stressor	Illustration
Will I be penalized for my pre-existing condition?	Health insurers don’t want to cover people with pre-existing conditions, which goes straight to the Affordable Care Act, and why we need to improve it, not tear it apart. Insurers love the fact when we have pre-existing conditions they don’t want to cover you-which is ridiculous. If you have CP or whatever other diagnosis, they’re like, oh, great, pre-existing, we don’t need to cover you-- which doesn’t make any sense.
Will I be treated differently because of my disability?	One of the biggest things that I have noticed a difference in, especially lately, is response time or response at all when it comes to referrals. I have been trying to get referred into physical therapy. I’ve been trying to get into counseling. And I’ll just-- my doctor will put in referrals, and I just never hear back from them. It takes a really, really long time just to even set something up. So I don’t know if that has to do with higher demand in town, or if it has to do with the fact that I’m on Medicare, or [because I am disabled]. But it certainly has been incredibly frustrating.
How will I get around?	In [my city] you need a car. I didn’t have a car. So I’m biking from one place to the other, maybe the nice folks from Community Services, if they could, would drive me in and out. But it just took much longer to get stuff done in some cases. The most frustrating aspect was interacting with the Department of Rehabilitation. I went through probably like a nine-month process of getting certified or having to write out what my professional career goals were and meetings and stuff like that.
Where will I get help?	You definitely don’t feel confident about going forward because you can only get shot down so much. And these appeal processes that take forever. Where do I start? Where I get help? And when you have the anxiety, where do you go to feel safe to share those personal things? Do I really want to go tell and talk to a stranger how difficult it is for self-care?
Will it be covered?	Had they told me, no, you’re not covered, when I called them previous to the appointment, I wouldn’t have made the appointment. Having to find out last minute when you get to the appointment that you’re not covered and having to pay out of pocket is crushing. Because frankly, there were other things that I needed to pay for.
Will I have coverage in the future?	I’ve been trying to plan my brother’s future. I actually reapply for his insurance form every year because I’m so concerned that he’s going to be without insurance. It gives me genuine anxiety. I get really concerned when I know that [Mom’s] going to have testing that there’s going to be something that her insurance isn’t going to cover, and I start thinking like, OK, preplan with my credit card, and some things like that.
Will I understand what is required?	I’m still trying to figure out what that means. I just don’t feel like people are very-- even the staff-- are very informed to help people with disabilities understand their own system.
What are my benefits?	And ultimately, they said, oh, we just found out that we can’t cover any [of it]. You already have a master’s degree, so we can’t help you with a PhD. Well heck, I told you that nine months ago. Why didn’t you tell me that?
Will I get what I need?	They were flat out saying no, we can’t cover anything unless you’re priority one. Because otherwise, you go into priority two, which I’m priority two. That’s a five year waiting list to even get seen. So they were flat out saying we can’t help you. And it’s like I just wasted my time.
Why do I need a prior-authorization?	The main issue I have with them is that the pre-approvals and stuff are completely absurd. I had a colonoscopy last November and I needed to go on medication right after. And I couldn’t get them. I went to the pharmacy at the hospital and they were like, we don’t accept your insurance. You’d have to pay all this out of pocket. And then I called around. My uncle drove me all the way to [the city] to get the medication. And then I get there and the pharmacist, I heard her, she was arguing with the insurance company. Luckily, the pharmacist fought so hard. She was like, she drove here two hours. You can’t just turn away and be like, sorry. I feel like if a medication works for you, you shouldn’t have to go through the steps to get to that.
Will you look after me?	For people with disabilities that come in the door, access to health care has been huge, even for those that are on Medicaid. Finding providers that accept Medicaid is a challenge, particularly if you’re talking dental providers.
How much of my privacy do I have to sacrifice?	There aren’t a lot of advocates. And a lot of times, what you’re given is a phone number to a random person that you don’t know, you don’t know who they work for, to help you navigate the system. So a lot of people don’t do it, because why would you just call a random phone number for someone that you don’t know for sure is going to be able to help you?
Am I being a burden?	But when the actual need comes, being disabled, you already feel like you ask a lot of others, especially people who are close to you. So it’s just that much harder … and then I can’t always pay them back anyway.
Will I have access to care?	Living in a rural town far from the cities, the closest health care specialists are a 45–90 min drive away. I work full time, and I live alone, by myself and two cats. And so the ability to make it to specialists, and that includes wheelchair repair, wheelchair van repair which [often takes] more than three months.
Will people believe me?	People will look at you and say, well, you’re not supposed to be here. And then I had to find some sort of documentation to say look-- oh, OK, then go ahead. Whether it’s even waiting in line at the DMV, where I’m entitled to have a line, and you get the frown. You know, I would joke around that maybe I needed to put on a skit, and just kind of like look the part so [people] leave me alone. So there’s this issue so of not fitting the prototype or the stereotype.

A study performed in Australia sought to quantify the stress that people with disabilities encountered when they attempted to file disability-related claims and use that calculated stress score to predict long-term disability (Spittal et al. 2018). Spittal’s work is important because it identifies and measures the profound stress that people with disabilities face when they act to file claims with the goal of restoring health and workplace participation. The importance of stress as a predictor of long-term disability ought to be enough to convince administrators to simplify claims-handling processes, yet sadly there is little improvement in these systems to date. Instead, administrative barriers were seen to be especially unnecessary and highly disruptive, a finding that is pervasive in the literature (Saffer, Nolte, and Duffy 2018).

They’re giving me the run around, saying I have to talk to Joe Schmo. Joe Schmo is telling me I had to talk to Lucy Lu or whatever the case might be. So, I’m never really getting any answers. So then when I started digging for these myself and trying asking these questions, they’re like, oh, we’ll give you a call back. Sometimes the callback is two hours later. Sometimes it’s two months later. And that’s the red tape that I have to go through.

We end up in a position of advocating for a Medicaid system that I personally struggle with supporting. Because we have all these silos of healthcare. We have Medicare. We have Medicaid. We have VA. And the level of absurdity when you start trying to work with people in the complexity of dealing with those and the dual coverages, really begs the question, why do we as Americans accept this?

The result of a fractured and siloed healthcare system with disability policies that are applied ineffectually is more stress for the people who have to navigate those systems to survive and thrive. Interacting with the system exposes persons with disabilities to a multitude of stressors, the impact of which is well documented: all biological systems of the human body are affected by stress (Cakmur 2020). Stress has a profound impact on the nervous system and on inflammation, which in turn interacts with the immune systems of the healthiest people, whereby long-term stress results in physical and mental health problems. The deleterious impact of stress on disability is well established. People who suffer with anxiety and depression are more likely to have greater symptoms and more disability when their perceived stress level is high (Chaudhary et al. 2017; Sumner et al. 2020). The positive correlation between high levels of self-perceived stress and greater disability is also observed with acute injury-related disability (Pozzato et al. 2020), temporary work-related disability (Lazaridis et al. 2017), and intellectual/learning disabilities (Bishop-Fitzpatrick et al. 2017). Siripornpanich, Rachiwong, and Ajjimaporn 2020), who measured salivary cortisol secretion (a marker of stress) in healthy people and in people with disabilities, concluded that higher cortisol levels in people with disabilities reflect the result of the stresses of living with a disability.

In summary, the participants in this study listed an astonishing number of stressors that arise as a result of living with a disability. Given the abundance of evidence between stress and poorer outcomes in people with disabilities, there is much work to do in order to simplify the administrative systems with which they must interact to achieve full participation in society. We could reduce the stress of living with disability by assuming a social model perspective, transferring the burden of reducing social and environmental obstacles away from persons with disabilities toward the community and governmental agencies through which they must operate.

Thematic Statement 4: I find meaning and hope in being part of the independent living movement.

A compelling response to the reality of living within the US healthcare system as a person with disabilities was the focus on, and redemptive qualities of, the independent living movement. Independent living was defined by participants as “a civil rights movement,” being able to “live as normal a life as you can” or “having the right and the opportunity to live however much of an independent life that you choose.” It was seen as a radical act of advocacy, in helping “people to live the lives that they want to live, [allowing] them to live their version of normal … to do the things that every human has the right to do.” The independent living movement in the U.S. is tied to disability pride and the celebration of disability identity. Where the overriding understanding of disability by the general public is one of personal tragedy, disability pride counters that understanding and looks for ways that persons with disabilities can live flourishing lives (Barnes 2016). This was felt on a highly personal level by a participant who said,

[The independent living movement] is really hard to define. It’s very integral to who I am. It’s kind of like, what does breathing mean to you? It’s kind of like when people ask what is disability pride to you? I can’t explain it. It’s me. Independent living is the way you live your life just like every other American does, being able to live the American dream and do everything without having to explain that disability doesn’t mean deficit or doesn’t mean that you want to be fixed or healed or anything like that.

The independent living movement was seen as “an alternative and in opposition to the medical model that is still valid,” which allows persons with disability to be “part of a community and having community resources” so that they are not isolated or separated; it is a “unification social movement.” A participant expressed joy at being able to live alone and pay her own bills upon finding a job after her master’s program and said, “that’s what it means to be able to take care of myself.” An important aspect of the independent living movement is the call to “[fight] for choice, [fight] for freedom, [fight] for living in your own home.” In accordance with the independent living philosophy, Deegan (1992) and Dejong (1979) describe the ways that people with disabilities become experts in their own self-care over time and emphasize the dignity conferred by being allowed the risks of personal choice and independent living.

Independent living creates community and safety in numbers for persons with disabilities who have to “fight every day …for access to transportation, for access to accessible housing, things that most people don’t have to think about.” This includes fighting for things that should be taken care of as a result of the Americans with Disabilities Act, such as when someone “moves into these $300 or $400 a month apartments” and cannot get up the stairs to the building or through a bathroom door that is too narrow for a wheelchair. These contingent barriers to full function and participation demonstrate the disabling effects of social, political, and built environments that fail to accommodate persons with disabilities, and confirm the tenets of the social and political models of disability (Oliver 1996; Clare 2017; Kafer 2013).

A second, meaningful aspect of the independent living movement was the emotional boost it provided, by “[helping] me to connect with people better, [establishing] understanding with individuals who share disability with me.” This is explained by participants who said:

For so long I was so ashamed because I was afraid. And everybody was like, hey, welcome to the community! And I have so many brothers and sisters in this movement that I am so glad I got the opportunity to meet. And if I ever need to be like, oh, my gosh, here, let me tell you what happened at this doctor’s appointment, I have somebody to talk to that understands.

Cherry (2020) discusses the importance of what she calls “solidarity care” in marginalized communities. Solidarity care is characterized by unity and mutual support, as well as a special disposition to assist and comfort group members. For our interviewees, solidarity care was an important aspect of independent living:

It’s like we can empathize because we know where you’re coming from, as another person with a disability. First off, you have to know, number one, you’re worth it. And number two, you’re not alone.

The independent living movement also provided a safe space to dream about and advocate for healthcare models that might better fit the needs of persons with disabilities. This includes the need for guaranteed coverage, greater “mental and psychological support, as opposed to physical support,” the inclusion of durable medical equipment and attendant services on insurance plans, more timely diagnosis, more affordable medications, more choice when it comes to the selection of a physician and facility, and more affordable health insurance options. One participant explained, “I feel like there should be an insurance program that is free, because I pay $149 a month for my Medicare and that’s taken out of the $700 I get.” Other participants described the essential nature of healthcare by saying,

I think that insurance is an inherent human right, and healthcare is something that people need to survive, and people die because [they don’t have] it.

I talk to people from other countries who have incredible health insurance. There’s this guy in Europe who couldn’t believe how messed up the health insurance system was here.

Finally, in part because of the effort expended to learn how to navigate complex systems, participants took pride in advocating for themselves and other people with disabilities within the independent living movement. All of the participants in our sample shared a story about needing help advocating for themselves or being an advocate for someone else. Participants shared many examples of advocacy: helping people with assistive communication devices make full use of them during healthcare appointments, arranging for interpreters for the Deaf, requesting medications in blister packs, accessing food stamps, getting signatures on the right forms to acquire low-cost assistive devices, and accompanying friends and clients to healthcare appointments: “Any time he would go to the hospital, I’d go with him. And the main reason for that is that [emergency rooms] don’t tend to listen to people with disabilities.” Participants also described self-advocacy efforts. One participant recalled a time when she was home alone and decided to go to urgent care after googling the potential causes of pain behind the knee, suspecting she had a deep vein thrombosis:

So, I went to the walk-in clinic… They took my $30 copay and …then the doctor came in and said, I’m sorry it’s too late in the evening for us to run any of the tests that we would so you need to go to the emergency room. I think 10 years ago …I would’ve spent hours in the emergency room all by myself and then paid … and I would have been pissed. So instead, now, because I’ve got this sense of power, which I want all disabled people to have, I was like, well what test are you going to run there that you can’t run here? And I want my copay back, because if you can’t do anything for me, why did you invite me back here to tell me you can’t do anything? And he explained what tests they would do, and I said, I’m just going to go do it myself and pay for that to be done. And he goes …we will have your results in a couple hours. I shouldn’t have to be the one thinking about that.

It is hard to separate advocacy from the independent living movement. Perhaps as a result of the synergy participants felt between advocacy and independence, or perhaps because it remains difficult for people with disabilities to acquire jobs outside of the disability community, most participants held positions, paid or unpaid, in various independent living communities that were not highly paid, but which contributed to their sense of belonging and provided a purpose.

A lot of people say we empower, but that is such a strong word. We’re just acting as a peer that they can sit down and have a conversation with someone about what independent living looks like for them. We want to establish some timelines, and from there … establish some sort of a plan … and that’s the goal right there. Once they finally get it, it’s amazing, you know? It’s a feeling, I can’t explain it, you have to be there.

People with disabilities have worked within disability organizations for years as a way to improve confidence, self-worth, self-efficacy, and improve participation in group activities. In a seminal study Miller and Keys (1996) found that an effective way to combat discrimination, marginalization, and segregation was to work closely with other people with disabilities and to build on each other’s strengths. Those who worked in paid jobs elsewhere did so largely out of the need for better health insurance, yet still benefited from advocacy, “I’ve learned a lot and … can … advocate for myself, and I don’t feel as uncomfortable anymore when I ask questions.”

In summary, participants drew satisfaction and pleasure from working in the independent living community, even when they felt unable to “earn six figures.”

Summary

The participants in this study shared their perspectives on disability policy as it pertains to the US healthcare system. Participants described a cascading sequence of events: the inability to secure meaningful employment outside of the disability community, which results in low-paying employment. The combination of low-paying jobs and lack of access to federal and state programs which support people with disabilities financially, leads to insurmountable financial strain. Financial stress, when combined with other life stressors likely exacerbates poor health. Their experiences lead to a fierce desire to live independently, selflessly advocating for others in the same situation. Disability policy has failed persons with disabilities in the United States, preventing them from thriving in modern society. We have a moral obligation to improve the system in which persons with disabilities seek to live and thrive.

Conclusion

Participants in this study detailed their frustrations with various aspects of health policy and point researchers toward an agenda of activism. American advocates for people with disabilities and researchers alike are hopeful that the COVID-19 pandemic may have a silver lining: the flawed American response has resulted in widespread public recognition of the faults in the U.S. health system, particularly the way it has exacerbated and reinforced disparities in access and outcomes for minority populations, including Americans with disabilities. Significant political changes in leadership at the federal level alongside huge government-sponsored investments in post-pandemic recovery have impelled a sense of optimism among those who lobby for better wages and disability benefits, more resources for home and community-based services, and greater access to health insurance and healthcare. It is a critical and essential time for the voices of disability advocates to be heard at state and federal levels. We trust that large scale projects such as Disability Stories (chril.org/stories) will enable efforts like it in America and throughout the world.

Points of Interest.

• It is critical to include people with disabilities and chronic illness or injury in national conversations about health policy because their lives can be greatly affected by it.

• The current definition of disability and models to explain thinking about disability are widely contested and debated by people with disabilities.

• Americans with disabilities desire to have a fulfilling work life, but find it hard to maintain full time regular employment due to a lack of insurance.

• American people with disabilities live with constant financial pressure and may not enjoy the retirement that others imagine for themselves.

• Navigating various insurance programs results in a great deal of stress for Americans with disabilities.