What your doctors don’t know about the Americans With Disabilities Act may impact quality of care.
They are called the largest unrecognized minority group in the country – the 61 million people with disabilities. How prepared are physician practices to accommodate people with ambulatory, hearing, vision and cognitive challenges? According to some, not very.
For people across all categories of disabilities, attaining and maintaining good health has been elusive in an unwelcoming healthcare system, concluded the National Council on Disability in its “Health Equity Framework for People with Disabilities,” released last February. “People with disabilities utilize the healthcare system for disease management instead of disease prevention and can even view the healthcare system as a source of potential harm. It is a paradigm that exists as a result of avoidable systemic barriers within our healthcare system; institutional discrimination; and the resistance to incorporate even minimal disability cultural competency curricula into medical, nursing, and other health professional schools.”
Physicians often lack the knowledge, experience, and skills to distinguish clinical concerns arising from disability from those related to other health conditions, according to NCD. “One’s apparent disability – even when unrelated to the reason for one’s healthcare visit – can result in diagnostic overshadowing of the clinical concern and can have negative impact during the healthcare visit.
“Furthermore, and also due to a lack of training and familiarity, people with disabilities are sometimes viewed as asexual. … The sexual health of women with intellectual disabilities is particularly ignored in terms of screening for breast and cervical cancer.”
The physician’s responsibility
“The physician’s ultimate role with any disability is to attempt to minimize or even reverse the causation of disability,” says Tom Schwieterman, M.D., chief medical officer, Midmark. “So, it is inherently logical that the environment where such assessment and therapeutic intervention is done should fully accommodate all types of disability.”
In fact, by law, healthcare providers must ensure full and equal access to their healthcare services and facilities.
Federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990 and the ADA Amendments Act of 2008, as well as the 2010 Patient Protection and Affordable Care Act prohibit discrimination against Americans with disabilities, including in healthcare, writes Lisa Lezzoni, M.D., Massachusetts General Hospital, and colleagues in a recent paper in Health Affairs titled “Have Almost Fifty Years of Disability Civil Rights Laws Achieved Equitable Care?”
According to the U.S. Access Board, the Affordable Care Act gives examples of diagnostic equipment that should address the needs of people with disabilities, including examination tables, examination chairs (including chairs used for eye examinations or procedures, and dental examinations or procedures), weight scales, mammography equipment, X-ray machines and other radiological equipment commonly used for diagnostic purposes.
Despite these laws, however, in a 2019–20 survey, 35.8% of physicians reported knowing little or nothing about their legal responsibilities under the ADA, and 71.2% responded incorrectly about who determines reasonable accommodations for patients with disabilities, points out Dr. Lezzoni and colleagues. (Such decisions require collaboration between patients and clinicians.).
What’s going on?
“In larger IDNs and healthcare systems, doctors may or may not know the ADA regulations, however, they are most likely in compliance,” says Cindy Juhas, chief strategy officer for CME Corp., the Warwick, Rhode Island-based medical equipment distributor. “The hospital or system administration is aware of the rules and have standards for construction, signage and equipment that would comply with the ADA regs.
“In smaller doctor’s offices and clinics, they may not know either, but if they do, they may not have the money or wherewithal to comply,” she adds. “There is very little oversight in the industry. The ADA is enforced through the Department of Justice, and the main source of oversight comes from lawsuits or complaints against a healthcare facility. I think there should be some concern, especially in independent physician offices.”
Dr. Schwieterman is not surprised about the percentage of physicians who reported knowing little or nothing about their legal responsibilities under the ADA. But he points to several factors that might explain it.
“Clinical information in medicine is doubling every few months,” he says. “Documenting in electronic health records can account for a staggering percentage of the workday. … [F]ollowing preventative and proper disease care has never been more challenging. So, it does not surprise me at all that knowledge of a legal standard for ‘reasonable accommodations’ may be lost in the shuffle. … Providers need a healthier system where they have sufficient time to focus on things like the ADA and other quality-assuring initiatives.”
For its part, Midmark views disability-related guidelines and regulations as “valuable tools that provide guidance and insight to help us ensure we provide safe and effective solutions,” not simply “rules to be followed,” he adds. For example, Midmark barrier-free exam chairs meet or exceed the low height guidelines set forth by the U.S. Access Board. “It is vital for providers to be able to bring equipment to an accessible height for transfer. This includes facilitating a downward transfer for a patient utilizing mobility assistance such as a wheelchair. A low height transfer is safer for the patient and for any staff that may be assisting. Research has shown that when accessible equipment is not available, parts of the exam are often skipped.”
Midmark also offers accessories to assist with transfer and stability for patients, says Dr. Schwieterman. “Patient support rails provide the U.S. Access Board-recommended 1¼-inch continuous gripping surface to allow a patient to securely support themselves. Each support rail can be rotated 180 degrees to allow for a clear transfer surface. Once a transfer has been completed, the rails provide an extra sense of security and stability as they serve as barriers to the edge of the chair in seated and either supine or prone positions.”
Vision, hearing, intellectual impairments
Accessibility issues aside, providing high-quality care to those with hearing, vision or intellectual impairments presents its own set of challenges for the physician practice.
“Effective communication between patients and clinicians is essential to ensuring high-quality care and is required under the ADA and Rehabilitation Act Section 504,” writes Dr. Lezzoni. “For people with disabilities that affect oral or written communication (for example, relating to hearing, vision, and speech), various auxiliary aids, telecommunication methods and other services facilitate effective communication. However, research suggests that patients often do not receive these accommodations.
“Not surprisingly, a large fraction of ADA lawsuits involve failures to ensure effective communication,” she points out. “For example, deaf patients report that some physicians communicate through note writing, lip reading, talking slowly, or shouting rather than providing sign language interpreters or other accommodations. People with vision impairments also experience health and healthcare inequities, perpetuated by inaccessible communication with clinicians.”
A 2019–20 U.S. national survey found that more than half of outpatient physicians never (36.7%) or rarely (19%) provide printed materials in large type, and more than half never (23.8%) or rarely (26.4%) give a spoken description of the exam room to their patients with limited vision, even though patients with vision impairments have indicated that these strategies would improve their healthcare experiences, according to Dr. Lezzoni.
Dr. Schwieterman points out that providing care for people with cognitive, vision-related or hearing disabilities can be challenging but can be addressed with proper planning. For example, when examination rooms are designed (including layout, workflow and equipment), the practice can provide for adequate space for supportive individuals to assist in communication and translation of the encounter. “Sometimes, the best accommodation is to facilitate the existing and trusted accommodations the person has at their disposal,” he says.
“Regarding hearing disabilities, there have been advancements made in making the examination room quieter, more pleasant and intimate. Equipment is quieter to operate thanks to advancements in the engineering of actuators, and the ability for provider and patient to meet face-to-face, in close proximity during the encounter fosters a better experience, especially if the patient with hearing loss needs to read lips or needs gestures to understand the provider.”
Is it affordable?
Federal tax credits and deductions can help smaller practices offset expenses associated with purchasing ADA-compliant equipment, says Dr. Schwieterman. Section 44 of the Internal Revenue Code allows for a tax deduction of up to $5,000 for qualifying practices each year in which they purchase a new piece of compliant equipment. “Perhaps more important, accessible equipment allows for better outcomes and can reduce treatment costs while simultaneously supporting a wider range of patients,” he says. “It is projected that the impact of improving prevention and treatment would result in a reduction of $220 billion in treatment costs.”
And what about reimbursement for physicians caring for people with disabilities?
“Physicians classify patients with diagnoses as a foundation to improve clinical outcomes, including the obvious goal of reducing any disability,” says Dr. Schwieterman. “As such, physicians ARE given higher reimbursement for patients with diagnoses that lead to disability. This occurs via higher payments in Medicare Advantage for patients at higher risk for developing chronic conditions and those with extensive disease burdens. In addition, there is more robust reimbursement for complex clinical engagements at office visits (E&M codes), such as cases where disability is present. However, our payment system is built on diagnoses and procedure codes and less on disabilities.
“What is lacking for physicians is both formulating a diagnosis AND properly qualifying and categorizing a disability in legal (i.e., ADA) terms and knowing the precise level of performance for a patient. The time and lack of tools to do the latter makes this difficult. Qualifying a disability in terms akin to the ADA often involves a multidisciplinary assessment of how well that patient can perform activities of daily living, perform ambulation, achieve routine physical tasks, perform cognitively, etc. The ambulatory setting is simply not set up to perform such an extensive workup for everyone showing signs of disability at a routine office visit.
“Finding a way to close this gap and tie a disability in both clinical and legal terms to payment structures would be a positive step forward.”
Says Cindy Juhas, “By far, the greatest advances are with ambulatory difficulty. And I think this is mostly because manufacturers of compliant equipment and their distributor partners are educating physicians and healthcare systems. Unfortunately, I think all the other disability types need to be addressed. From a distributor perspective, there aren’t a whole lot of products out there that can help with these. I have seen some strides with vision difficulty, so that one probably has the best chance of getting some attention.
“I believe that until there is some real oversight from the government, there is little incentive for these other types of difficulties to be addressed. Most of the burden lands on the family of the disabled as of now.”
According to Dr. Schwieterman, “The medical community needs to increase their focus and ability to determine the capacity an individual currently has for each type of disability. Providers often are not aware of just how problematic a hearing or vision disability is for a patient, how difficult it is for a patient to walk or climb steps, or how well a patient functions in the ‘real world.’ Too often, those knowledge points about a patient are learned only anecdotally or via family members, or not at all.
“The system is geared to define the ‘why and what’ related to disability, but far less ‘how’ a person is living with it.”
Editors Note: Can your physician customers use some help as they work to provide equal access to care for patients with disabilities? Steer them to the CMS Office of Minority Health (www.cms.gov/About-CMS/Agency-Information/OMH/resource-center/hcps-and-researchers/Improving-Access-to-Care-for-People-with-Disabilities) for tools and resources on how to improve physical accessibility, how to communicate effectively with patients with vision or hearing impairments, and more. The U.S. Department of Justice has a simple Q&A regarding physicians’ ADA responsibilities to individuals with mobility disabilities at www.ada.gov/resources/medical-care-mobility.
Sidebar:
Disability and health disparities
Health disparities between persons with disabilities and their nondisabled counterparts have failed to improve since the National Council on Disability issued its 2009 report, “The Current State of Health Care for People with Disabilities,” according to the agency. Today, in the United States, if you are a person with a physical, intellectual or developmental disability:
- Your life expectancy is less than that of someone without disabilities.
- You are more than three times as likely to have arthritis, diabetes and a heart attack.
- You are five times more likely to report a stroke, chronic obstructive pulmonary disease and depression.
- You are more likely to be obese.
- You are significantly more likely to have unmet medical, dental and prescription needs.
If you are a pregnant woman with a disability, you have a much higher risk for severe pregnancy- and birth-related complications and 11 times the risk of maternal death.
If you are an adult who is deaf or hard of hearing, you are three times as likely to report fair or poor health as compared to those who do not have hearing impairments.
An intellectual disability is the strongest predictor for COVID-19 infection and the second strongest predictor for COVID-19 death.
Source: Health Equity Framework for People with Disabilities, National Council on Disability, February 2022, www.ncd.gov/sites/default/files/NCD_Health_Equity_Framework.pdf
Sidebar:
Education: The missing piece
Many healthcare professionals were never trained on how to care for people with disabilities, but that may be changing.
Equipping a physician office to ADA specs is an important – and necessary – step for physicians to treat patients with disabilities. But equipment alone won’t make doctors, nurses and staff comfortable welcoming such patients, speaking or communicating with empathy, touching them and providing the best of care. All of these traits may come naturally to some caregivers, but others could benefit from formal training. Up until now, such training has been lacking.
“The lack of comprehensive disability clinical-care education and disability competency training among medical, nursing and other healthcare professionals perpetuates discrimination in healthcare against people with disabilities,” concluded the National Council on Disability in its 2022 “Health Equity Framework for People with Disabilities.” “Federally financed medical, nursing, healthcare professional, and allied health professional schools, as well as post-graduate residency and fellowship programs, fail to incorporate disability clinical care into curricula or training. That must end.”
The Alliance for Disability in Health Care Education intends to change things. Since 2012, the Alliance has brought together educators from medicine, nursing, psychology, physical therapy, occupational therapy and other allied health professions to integrate disability-related content and experiences into healthcare education and training programs. Through journal articles, conference presentations and participation on advisory panels and workgroups, the Alliance strives to ensure that the need for disability-related education and training in healthcare is recognized and addressed.
One officer of the Alliance is Andrew Symons, M.D., a family physician at UBMD Family Medicine, an academic practice in Western New York, and vice chair for medical student education in the Department of Family Medicine at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo.
Since 2008, the University at Buffalo has integrated disability education into all four years of medical student education, he says. In their first year, students meet with people with disabilities, who talk with them about their experiences in the healthcare system. The meetings are facilitated with the help of local organizations providing support for people with disabilities. “For us, it’s not so important what the particular disability is, but rather, what is called ‘disability etiquette,’ that is, learning how to approach people in a patient-centered manner,” says Dr. Symons.
A lot of it boils down to listening and communicating with the patient, he adds. For example, rather than directly addressing the patient who has the disability, doctors often direct their questions and comments to a person accompanying the patient on the visit, regardless of who that person is vis-à-vis the patient and regardless of the patient’s need for assistance in communication, he says. Students are encouraged to address patients directly or seek help or information from the other person only after asking the patient if they may do so.
But there are other aspects to disability etiquette, he says. For example, sometimes doctors get distracted by their patient’s disability and fail to address the issue at hand, even when it has nothing to do with the office visit, such as an allergy. In other instances, when they lack disability-specific knowledge that can help with a diagnosis or treatment plan, they forget to ask the patient for information. “They forget that sometimes, patients themselves are the best source of that knowledge,” he says. In addition, as doctors become better trained and more familiar caring for people with disabilities, the more comfortable they tend to be managing patient care themselves rather than routinely referring patients to a specialty clinic.
In their second year at the Jacobs School, students focus on the potential challenges of clinical encounters with patients with disabilities. They get input from a physiatrist, that is, a physical medicine and rehabilitation physician, then practice with people from the community with disabilities who have been trained to role-play real patients.
“So, in the first year, we’re addressing the fear of talking to people with disabilities, and in the second year, we’re addressing the fear of touching and caring for them,” says Dr. Symons.
In Years 3 and 4, students are provided clinical experiences in the community, perhaps in a primary care clinic or organization that focuses on people with disabilities, or through training from physical therapists, neurologists or other specialists.
“I believe that because of our curriculum, our students are more comfortable with patients with disabilities,” he says. The program has been well-received by students and faculty as well as the local people with disabilities who work directly with the students, he says. “They appreciate the opportunity to talk to student physicians. They love being able to teach them.”