The Challenges of Living with a Disability in America, and How Serious Illness Can Add to Them

“My wheelchair equals ‘my legs.’ But under [Centers for Medicare and Medicaid Services] rules, I can only get a new chair every five years,” says Burt Pusch, a lifelong disability advocate and retired university professor who receives his health coverage through Medicare. “A lot of the people I know have wheelchairs that are falling apart. Their chairs are literally being held together with duct tape and wire. These individuals have been denied approval for a new chair because of some arbitrary five-year magic window.”

Pusch’s experience withMedicare’s policy on replacing durable medical equipment underscores the many ways that the U.S. health care system fails to meet the needs of the 85 million Americans living with disabilities, such as physical limitations, cognitive difficulties, or serious mental illness.

Almost all of us know someone with a disability. Four million veterans — more than one in five — are living with a disability that is the result of a disease or injury that occurred during active military service. And in a split second, an accident at work or while crossing the street could leave any one of us to contend with a changed physical or intellectual reality. In spite of this, a large body of evidence shows that people living with disabilities receive lower-quality care and less preventive care, and have a higher incidence of chronic conditions than people without disabilities. People with disabilities also face higher out-of-pocket health care costs and are more likely to live below the federal poverty level than those without disabilities.

In addition, people living with a disability are more likely to experience serious illness than their peers — and those with serious illness are more likely to have a disability than those who are not seriously ill. In a recent survey of the sickest adults in America conducted by the Harvard T.H. Chan School of Public Health, the New York Times, and the Commonwealth Fund, almost two-thirds (62%) of those with serious illness reported living with a long-term disability. Respondents were defined as living with a long-term disability if they reported having a multiyear physical or mental health issue that kept them from participating fully in work, school, housework, or other activities.

Our survey findings, along with expert interviews, affirm that our society and health system make it difficult for people with disabilities to live in community settings, have a job, and afford the health care and supports they need. Living with a serious illness compounds these challenges.

These individuals also face obstacles and discrimination when they seek care, including not feeling respected by their health professional and being unable to simply get into the doctor’s office. “One might think that health care settings would actually be much more accessible [than nonmedical settings], but that’s often not the case,” said Melinda Karp, vice president of Consumer Centered Quality at Commonwealth Care Alliance, a plan and care delivery network for individuals with complex needs, including disabilities, in Boston.

Disability Keeps Many in Poverty

Living with a disability is expensive and can require spending on medication and frequent health care visits, a wheelchair-accessible vehicle, in-home personal assistance, and adaptive devices and clothing, along with the usual costs of living. Living with serious illness only worsens these financial stresses. According to our survey, almost half (44%) of seriously ill Americans living with a long-term disability used up all their savings, compared with about one-quarter (24%) of those with no disability. Almost a third (29%) of the seriously ill living with a disability said they were unable to pay for basic necessities like food, heat, and housing, compared with 12 percent of those without a disability. Around two-thirds (64%) of the seriously ill with a long-term disability said they wanted to work but were unable to. More than half (58%) of these adults also reported that once they became seriously ill, they were unable to do their job as well as before. By contrast, only one-third of the seriously ill living without a disability experienced either of these work-related issues.

People living with disabilities have much lower labor force participation rates than those without them. In 2018, 19 percent of Americans with disabilities were employed, compared with about 65 percent of the general population, according to the U.S. Bureau of Labor Statistics. Reasons vary, but one is that those who receive disability benefits and go back to work risk losing these benefits if they make more than $1,000 per month. Experts say this forces some people with disabilities not to work, or to stop working full time, in order to qualify for benefits they need to cover their living expenses. Others are unable to work full time because employers do not offer flexibility — around work hours, for example — that may be required to manage a disability.

Inadequate Community-Based Support

People living with disabilities often require long-term services and supports (LTSS), which include assistance with day-to-day activities such as transportation, help with bathing or cooking, and management of routine care. “Not everyone with a disability needs a personal care attendant 24/7 . . . [but] individuals with significant disabilities have total dependency on the care supports around them,” Karp says. “It can be hard to find consistent, stable, and high-quality long-term support.”

A growing number of people with disabilities want to live in their communities rather than an institutional setting. But because of “the underdevelopment of our community-based care systems, people with disabilities continue to find themselves in clinical settings either when they don’t want to be there, or where it might not be appropriate,” says Henry Claypool, policy director of the Community Living Policy Center at the University of California, San Francisco.

By not making it possible for more people with disabilities to live in the community, our society is failing to treat them with respect, advocates say. “We overmedicalize human beings who present a different set of biological circumstances,” Pusch says. “We devalue human beings who have inherent worth through labels like ‘patients’ and ‘public welfare recipients.’”

Emotional Stress and Social Isolation

People with disabilities are also more likely to face social isolation, which carries its own health risks, including increased risk of death. “When a person’s disability includes a mobility impairment, one issue that can arise is increased physical and social isolation. As opportunities for social engagement get smaller and smaller based on an individual’s ability to navigate their physical surroundings, depression and anxiety can also develop,” Karp says.

In our survey, 71 percent of people with serious illness and a long-term disability reported feeling helpless, anxious, or confused when receiving care, compared with 46 percent of the seriously ill with no disability. More than half (57%) said their condition caused them emotional or psychological problems, compared with a third (32%) of those with no disability.

How the Health System Could Better Meet the Needs of Americans with Disabilities

When people with disabilities develop serious illnesses, they are more likely to report dissatisfaction with their health professionals. The participants in our survey with disabilities were more likely to say that hospital staff was not responsive to their needs than those without a long-term disability. Almost one-quarter of people with serious illness and a long-term disability reported they felt they were treated unfairly because of their disability.

Our survey and interviews suggest that while the health care system is difficult to navigate for people living with disabilities, changes — both large and small — could help. Adequate funding for LTSS, including community-based services, would make it easier for people with disabilities to live with independence and dignity. Many issues that are currently treated in clinical settings could be taken care of in the community. According to Claypool, “Now some states realize that it is better and more cost-effective to provide community-based supports instead of serving older adults in a nursing home.”

Other aspects of the care system could also be improved, which would benefit not only those with a disability but also other people using health care services. Policies and tools that facilitate improved coordination and partnerships between health care and social service organizations would help address many drivers of poor health.

Several programs and demonstrations have successfully tested new models that could be replicated. For example, the Commonwealth Care Alliance’s One Care program for “dual eligibles” — those eligible for both Medicare and Medicaid — showed that when interprofessional care teams have flexibility around how to deploy resources, they can deliver better care. CCA is also rethinking the design, delivery, and evaluation of its programs to support patients with complex needs, including those living with disabilities. One effective strategy is to codesign programs with the people who use them, rather than asking for their feedback after the fact, or not asking for it at all.

This could not only improve how people living with disabilities experience the health system, but also, Pusch says, “encourage and support us as contributors to our communities.”

Adds Karp, “There’s a real gap between those who are professionals in the system, and those who are the patients or consumers being served by the system. The fact is, our patients have incredible expertise that if we don’t tap into, we’ll never get to the right solutions.”