President & CEO
United Spinal Association
“Healthcare is a human right:” both a timeless and an urgent slogan for so many people living in America today. It is a universal clarion call that may resonate differently with everyone who hears it, but it maintains its universality precisely because it addresses a vast array of inequities and disparities owing to race, gender, sexuality, class—and disability. Part of the challenge of uniting Americans around our widespread desire for a better healthcare system—and turning something widespread into something truly collective—is discovering how to integrate our disparate experiences, advocacy and activism into one conversation and one movement. We have a lot to learn from each other.
For people in the disability community, accessibility and accommodation issues in healthcare continue to be a flashpoint, even thirty years after the Americans with Disabilities Act (ADA). They reflect—and compound—all of the other iniquities we endure in everyday life. Because of my spinal cord injury, I am especially reliant on specialist care to live my best life. Every American should be able to feel a certain level of trust towards their healthcare providers—and people with disabilities even more so.
However, there are multiple instances even in the recent past where I have been prevented from obtaining healthcare. Not because of financial obstacles, not because of geographic isolation (I am in Atlanta, GA), and not for a lack of effort with selecting providers with a good reputation. In one case, I could not even enter the building where my root canal was scheduled; there was no ramp. For a wheelchair user, this is de facto segregation.
Even once people with paralysis or other mobility disabilities and impairments actually make it inside the doctor’s office, we can be confronted with numerous barriers and obstacles to receiving the same level of care that people without disabilities do. The barriers are both physical and attitudinal. We experience them nearly from the moment our visits begin. A universal experience for wheelchair users is being told we cannot be weighed at some point in our lives. Scales that accommodate wheelchair users are an extreme rarity, and those of us who are weighed can be subjected to degrading workarounds that may make outright denial a preferable option. So, for many of us, a complete primary assessment of our health remains a mystery. Our weight can be determinative of both courses of treatments and physicians’ judgments about the efficacy of ongoing treatments and health regimens—this information is so important for everyone, but somehow, only readily and easily available for people without disabilities.
I’ve heard clinicians tell me that buying an adjustable examination table was too expensive. I’ve been denied prostate exams across the span of my injury because of a lack of adjustable beds. Moreover, I’ve had a clinician tell me she was incapable of transferring me onto a standard table, and, at my own considerable risk and with great effort, I made it up there myself—but what if I fell? Visiting the doctor can already be a nerve-wracking process. It should not provoke ominous “what if?” questions, but rather, give me certainty that I am receiving the care everyone is due.
The ADA requires equal access to healthcare services and facilities. The Department of Justice has elaborated on the provisions of the ADA with specific guidance recommending the use of accessible medical diagnostic equipment (MDE), and the Affordable Care Act provided for the US Access Board to develop standards for MDE. More on this process and United Spinal and other disability rights advocates’ efforts in securing guidance and enforceable rules around MDE can be found in the update below.
Yet, multiple studies suggest that less than 10 percent of outpatient healthcare clinics have the adjustable tables and lifts we often need to receive adequate care. Ensuring and enforcing the use of accessible MDE is a major issue for our community across the board, and it affects a broad spectrum of care.
Recently, United Spinal Association undertook a study of this issue among its members in partnership with Bristol Myers Squibb. It shined a light on the extent of this problem, and I look forward to its eventual publication. Our members encountered accessibility-related problems with breast ultrasounds, MRIs, being seated in tables with stirrups at the OB/GYN, bone density machines, stretchers in emergency rooms, eye exam equipment, dentist tools, lifts, slings, and x-ray machines. Only 40 out of 257 respondents said their provider was always receptive to providing accessible MDE.
People in our community have spoken about working with permanently lowered standards for the care they’re willing to accept. Worse still, others say they have avoided seeking annual exams, period, because of this problem. This is a crisis for our community.
Think of all of the serious health conditions that have gone undiagnosed and untreated because we have either learned to accept less or have become completely alienated from the care environment. Rather than obtaining the preventative care that keeps us healthy or receiving the medical supervision that helps us manage chronic illnesses, we could instead find ourselves the recipients of far more costly emergency care with poor medical odds.
It will take not only patient and smart advocacy and direct work with government agencies, material resources and the commitment of equipment manufacturers, but also the cooperation of the medical community to make the clinical environment capable of equally serving people with disabilities. There needs to be an attitude shift to accompany and help enable our freedom from structural discrimination. We need to find creative, clear and relatable ways as patient advocates to convince the medical establishment to resolve this major civil rights issue.
We need to not only make sure the laws that protect us are properly enforced and updated with regulatory standards, but to open and maintain a dialogue where we are properly heard—so we can be treated with dignity. We need our allies in medical professions to stand strong with us. For the diminished expectations to which people with disabilities are subject all too often in wider society can prove to be lethal in the care setting.
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Update:
As a Steering Committee Member of the ITEM Coalition, United Spinal Association has been advocating with other stakeholders in the disability community for several years on the need to enforce standards on accessible medical diagnostic equipment (MDE). A couple of years ago, United Spinal Association and others provided input to the Department of Health and Human Services’ Administration for Community Living on this fact sheet “Wheelchair-Accessible Medical Diagnostic Equipment: Cutting Edge Technology, Cost-Effective for Health Care Providers, and Consumer-Friendly” on Medical Diagnostic Equipment. With this fact sheet, ACL is able to provide guidance to Federally Qualified Health Centers reminding them of their responsibilities under the Americans with Disabilities Act and the Rehabilitation Act.
In January 2017, the U.S. Access Board issued final standards for accessible MDE. The standards for MDE contain minimum technical criteria to ensure that medical diagnostic equipment, including but not limited to, examination tables, examination chairs, weight scales, mammography equipment, and other imaging equipment used by health care providers for diagnostic purposes are accessible to, and usable by, individuals with disabilities. However, without any directives from the Department of Justice, the Access Board’s final standards have no enforcement mechanism for implementation.
With that in mind, United Spinal, including Disability Rights Education & Defense Fund, National Federation for the Blind, National Organization of Nurses with Disabilities, Spina Bifida Association, and Paralyzed Veterans of America, has met with the Department of Justice, the National Council on Disability and the U.S. Access Board regarding a coordinated strategy in engaging both the Department of Justice and the United States Congress. United Spinal continues to discuss this important issue with the Department of Health and Human Services as well as the broader healthcare ecosystem including providers, physicians and disability advocacy organizations and is working on providing best practice documents and guidance for healthcare providers and individuals with disabilities alike. United Spinal Government Relations and Advocacy and Policy staff have met with key members of Congress on this topic and is actively working on providing best practice documents and guidance for healthcare providers and facilities regarding their responsibilities to the disability community.
—Alexandra Bennewith, MPA, Vice President, Government Relations, United Spinal Association