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More than 1 in 5 Americans live with at least 1 disability. This may be temporary, like a broken leg, or lifelong, like Down syndrome. Whether a disability is related to cognition, mobility, independent living, hearing, vision, or self-care, research has shown that those living with a disability experience pervasive health disparities compared to non-disabled people.
In light of these numbers, work by the National Council on Disability (NCD) found that “much of the Federal research effort remains focused on disability and disease prevention rather than on improving access to, and quality of, healthcare for people with disabilities, reducing their incidence of secondary health problems, and promoting healthy living."
Healthcare shown to perpetuate disability inequities
Compounding this situation, the very system set up to provide care to those in need has been found to perpetuate or exacerbate inequities. Systemic and institutionalized discrimination and ableism keep persons with disabilities from realizing their best, highest potential health outcomes.
“One might think that healthcare settings would actually be much more accessible [than nonmedical settings], but that's often not the case," states Melinda Karp, Vice President of Consumer Centered Quality at Commonwealth Care Alliance, an integrated delivery network for individuals with complex needs.
Systemic change requires facing systemic health inequities
People living with disabilities can have more complex and higher healthcare needs, face more significant barriers to accessing services, have less health coverage, and experience judgment and bias.
Healthcare, governmental, and community organizations are beginning to see the impact that prejudice, inadequate training, and insensitive policies and approaches can have on the health and well-being of disabled persons in their care.
In fact, NCD council member, Neil Romano, highlights the value of creating positive health equity change for this group has a ripple effect. He shared, "Getting the healthcare piece right for people with disabilities is the gateway for progress in other areas like employment." Additionally, addressing the complex and diverse nature of disability equity can become a keystone, helping create change for other socially or economically marginalized groups.
Beliefs and assumptions can enhance or alternatively erode healthcare for persons with disabilities
Research from 2021, led by Dr. Lisa Iezzoni, found that over 82% of physicians nationwide view people with significant disabilities as having a low quality of life. Her team's 2022 follow-up study revealed the physicians' preference not to treat persons with a disability, admission to uncaring treatment or incorrectly telling patients that their practices were closed, and not accepting new patients.
Another study from 2020 examined results from over 25,000 implicit association tests taken by physicians. The tests revealed that, although healthcare professionals across disciplines self-reported having little explicit prejudice against disabled people, their implicit attitudes revealed ableist bias.
Bias leads to inadequate or inaccessible healthcare
Clinician assumptions and beliefs have an enormous impact on patients with disabilities. Some have been denied equal access to organ transplants solely based on their disability. Others experienced healthcare rationing during COVID-19 or had their personal ventilator taken away because they were triaged not to receive care.
During a recent webinar, Dr. Andres Gallegos, NCD Chairman, shared, “How physicians see us is how they treat us." As a physician with a disability, Gallegos points to discrimination that is born out of believing that people who are more able in one aspect or another are deemed more valuable and worthy of care.
Bias in healthcare is shifting, but little for disabilities
While research out of Harvard has shown that attitudes can change and improve care, factors like disability, age, and body weight hasn't demonstrated change. One study found that “Sexuality biases dropped 64% over 14 years, but it hasn't changed at all for disability, age, or body weight bias. Disability bias over 14 years has only shifted by 3%."
Beyond bias: practical approaches to achieve equity in healthcare for persons with disabilities
A number of policies, approaches, and programs can begin to evolve attitudes and change thinking. This can lead to greater consideration and compassion when treating people with a disability. Ultimately, the healthcare system will renew its foundation, promoting equitable care that considers the population and the individual within the context of their life and environment.
To create fundamental change, healthcare professionals should rethink the word “disability." Rather than use this term to describe a deficiency of an individual, clinicians and others can adopt the Social Model of Disability. This model states that disability results not from any physical or mental condition but from environments and programs that do not accommodate or are not accessible to a person's unique functional level.
Alternatively, think of disability in the medical model—as a negative or intrinsic condition that disadvantages a person and must be cured or fixed—the idea is to put disability into the context of the environment the person engages.
In the social model, a person's physical disability doesn't prevent them from going for a walk in their community. It's the absence of sidewalks, curb cutouts, a lack of a wheelchair, or other mobility supports that prevents the ability to engage in the community.
Commit to inclusion training and inclusive philosophies
The National Center on Health, Physical Activity and Disability (NCHPAD) defines inclusion as community transformation based on social justice principles that are the foundation of DEI training. This type of training has been proven to impact patient outcomes in favorable ways, including:
- Improving treatment adherence
- Increasing patient trust and engagement
- Reducing healthcare costs
- Support healthcare teams to function more effectively, reducing professional conflict and improving patient experiences
Clinician training, like those offered by the American Association of Critical-Care Nurses, the Association of American Medical Colleges, and the American Hospital Association, provides opportunities to uncover and address implicit disability bias and create new, more accurate beliefs that support patients and align with the organization's care objectives.
One of the most important shifts needed in healthcare is to commit to inclusion and compassionate beliefs. All individuals, including those living with a disability, are treated with respect, presumed competent, welcomed and engaged as valued members of their community, invited to participate and learn with their peers fully, and are included in reciprocal social relationships.
Take a whole-person and individualized health approach
An interview on the DocsWithDisabilities podcast highlighted how even those working in healthcare and living with a disability experience a lack of accommodation. Bonnie Swenor, PhD, MPH, Associate Professor of Ophthalmology at the Wilmer Eye Institute at Johns Hopkins, has a visual impairment that causes disability. She stated, “From my viewpoint, those challenges are largely focused around the fact that we don't often look at the person as a whole person, and we don't always meet them where they are."
"For example, when I go to a doctor's appointment, and they hand me an after-visit summary in a normal-size font that's not accessible to me. I can't get that information very easily, at least. I have the resources to figure it out. But that's a challenge for me."
Every individual has capabilities along a continuum of function. When the patient is considered within the context of their life, work, and environment, they can be more successful in achieving their best health.
For example, the Center for Women with Disabilities at Magee-Women's Hospital in Pittsburgh, Pennsylvania, offers comprehensive, patient-centered care that integrates accessibility and accommodation for women with physical disabilities to ensure that the labor, delivery, and postpartum experience meets the patient on that functional continuum.
The LightHouse for the Blind and Visually Impaired at the San Francisco Vision Loss Resource Center (VLRC) offers an adaptive technology and health seminar where they provide audio transcription and information handouts of presentations on adaptive equipment. They also offer accessible tools for glucose monitoring, weight management, healthy food preparation, and exercise equipment, making everyday healthy behaviors more accessible.
There are many healthcare companies devising innovative and creative solutions for improving accessibility. One of them is Accessible Pharmacy, which offers a variety of solutions to provide pharmacy services to people with limited vision or those who are blind. This includes home delivery for medications, pre-sorted pill containers, braille labeling, and talking prescription bottles.
Advocate for fair and equitable healthcare policies
Reimbursement and coverage policies must become more flexible because needed accommodation is very individual. Burt Push, a lifelong disability advocate, and retired university professor points to antiquated coverage parameters, stating, “My wheelchair equals 'my legs.' But under [Centers for Medicare and Medicaid Services] rules, I can only get a new chair every five years. 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."
Programs like the Community Aging in Place—Advancing Better Living for Elders (CAPABLE) help bridge the gaps where Medicare coverage stops. CAPABLE offers handyperson services alongside nursing and occupational therapy to create solutions for low-income seniors, enabling them to age safely in their homes and neighborhoods. Their preliminary findings show that 80% of program participants experienced improved quality of life and health because of the new accommodations.
In May 2023, following years of advocacy, CMS announced a new national coverage decision that states Medicare will now cover seat elevation devices for power wheelchairs, which will make it easier for individuals with disabilities to complete daily tasks such as getting dressed or preparing food.
Give healthcare staff power to tailor support
The Commonwealth Care Alliance's One Care program empowers their interprofessional care teams with flexibility around how to deploy resources. Team members can rethink the design, delivery, and evaluation of its programs, tailoring support for patients with complex needs. Their approach codesigns programs with the people who use them rather than asking for feedback and satisfaction after the pilot.
Dr. Swenor points to the power of accommodations during her podcast interview. She underscored where taking a holistic approach must have the flexibility to go further. "For example, a patient is transitioning from inpatient to home care, right to the home. And there has been a lot of effort and focus on aging in place and home healthcare models. But are we considering sensory impairments that maybe preexisted whatever puts someone in the hospital, right?" She suggests that more can be done to set people up for success, stating:
"Until we can take a more integrative approach, we're in essence wasting resources."
Equitable care for disabled persons must scale from populations to people
As health equity becomes an increasing focus of community health needs assessments, CMS policies and models, as well as value-based contract requirements, changing the trajectory for how persons with disabilities engage with the critical services and equipment they need is paramount.
RTI Health Advance supports population- and person-centered health equity
Our team collaborates with payers, providers, and community organizations to achieve specific, measurable, and meaningful health equity goals. Backed by science and our reputation as part of a trusted non-profit research institute, we provide analytics, proven guidance, and structured support to turn important insights into impactful programs and outcomes. Contact us.
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