By: Kevin G. McGuire
“Physician, Heal Thyself”
I never knew what that old Biblical saying meant until recently. As someone with a law degree who just happens to use a wheelchair, I specialize in compliance with the Americans with Disabilities Act (“ADA”). My practice has me traveling around the country ensuring sporting facilities, theatres, buildings, and businesses are compliant.
I never gave much thought to accessibility issues for hospitals and medical facilities, though. After all, they’re the good guys, the ones who are trying to heal. Of course they’re accessible.
But after a recent stay in a Boston area hospital I learned otherwise. My hospital room didn’t have an accessible bathroom, the MRI and x-ray machines were too high and not accessible and point of sales with accessible counters were always closed. I expect to find non-compliant rooms at a hotel but at a hospital!?
As I began to let some friends and colleagues know about my injury and the issues regarding my disability during the hospital stay, I started to realize that my experience was not uncommon. In fact, the more I reached out to other people in my network with disabilities, or to caretakers of those with disabilities, the more I heard that each had experienced issues where their hospitals and medical facilities were not prepared to care for them.

Failure To Communicate

A good friend of mine, who happens to be deaf, went in for preoperative tests with the medical staff prior to his scheduled cochlear implant surgery, at a major Boston hospital that specializes in hearing loss. He brought along his Communication Access Real-Time Translation (CART) provider, a stenographer who translates all the speech to text so that he didn’t miss any of the doctor’s instructions. CART services are very commonly used in hospital settings to help facilitate communication. One of the physicians became irritated that the CART provider took several minutes to set up his equipment, and snapped, “Is this really necessary? You can read lips, can’t you?”

Another friend, who was undergoing chemotherapy for cancer, wanted to bring her daughter who is deaf to her appointments and treatments. Her daughter was her caregiver and advocate, and my friend asked the hospital to provide a sign language interpreter to relay the doctor’s instructions. The hospital refused, saying they were not legally required to provide help to the caregiver when they are deaf. “If your daughter could hear but speak only Spanish, then we could probably find someone on staff to interpret for you,” they were told. It took the threat of a lawsuit for the hospital to realize that providing an interpreter was the most cost-effective path.

My colleague, Christine Griffin, Executive Director of the Disability Law Center in Boston, represents people with disabilities in legal cases like these. “There are a number of communication tools available for hospitals, like in-person consultants and CART providers as well as Video Remote Interpreting (VRI) services, which can be used quickly in emergency situations,” she explained. “But often the patient must file a complaint or lawsuit before some healthcare facilities are willing to change.”

Griffin has conducted forums with people with disabilities, and notes that as a group they are very reluctant to file a complaint against their health provider. “A person who is deaf has the right to be provided with a properly trained and certified sign language interpreter within a reasonable time after they arrive at a hospital,” she explains. “But filing a complaint or lawsuit is one area where people with disabilities become intimidated, and worry their complaint will negatively impact their doctor, their local healthcare facility, or their ongoing care.”

An associate from Philadelphia, Tim, who is blind and uses a white cane, regularly runs on a treadmill at his gym. Recently he had some stress-related chest pain, and went into the hospital to see a doctor. “The nurses froze as soon as they saw my cane, and none had been trained in how to be a sighted guide and lead me through their offices,” he told me. But his problems didn’t end there.

The doctor wanted to perform a stress test, and Tim explained that doing a treadmill test would be no problem. But the doctor balked, and said that he’d be administering a chemical stress test, which involves injecting the patient with a drug that affects the heart. Tim didn’t want the chemical stress test. “I’m not going to have you fall down on the treadmill and hurt yourself on my watch,” the doctor told him. The ensuing discussion and legal mediation ended up causing Tim to spend an extra night in the hospital. In the end, after being forced to be his own disabilities advocate as well as the patient, he was able to do the treadmill stress test.

People with cognitive disabilities often have sensitivity to sensory inputs like pain and sound, which can make their hospital visits agonizing. For many people with autism, loud sounds are torturous. A Los Angeles buddy who cares for her teenage son with autism has told me that one of his sensory triggers is sharp noises, especially babies crying. But after being injured in a car accident, her son was admitted into the hospital and, because of his age, was put in the pediatric ward, surrounded by crying babies.

Her son could, however, understand what was happening and every word the doctor and nurses were saying. The doctor came in to explain a particularly scary procedure he was going to perform, and spoke directly to the mother, not bothering to temper his speech or take her outside the room for the consultation. When her son became visibly frightened at what the doctor was describing, he said “Oh, he can understand me?”

Can I Get A Lift?

Often the issues had to do with the hospital not having accessible exam equipment. I’ve learned the hard way that most MRI and x-ray machines are not accessible for wheelchair users, and many exam tables are 4 feet off the ground and not adjustable. I could make that transfer myself when healthy, but even then it would be difficult. And a lot of specialized equipment, like ophthalmology and gynecology exam tables, are not adjustable either. This means the staff must manually transfer elderly people and patients like me. Not only is it uncomfortable, it’s also unsafe for the hospital staff.

A recent study, reported in Annals of Internal Medicine, shows how pervasive this issue is. Researchers contacted 256 medical and surgical facilities in four different cities, and attempted to make an appointment for a (fictional) patient who uses a wheelchair and is unable to transfer from the chair to the exam table. A total of 56 practices (22%) reported they could not accommodate the patient at all, most often (at 47 of 56 practices) because they were unable to transfer the patient to a table in order to perform an exam. The percentage of inaccessible facilities rose to 44% when reporting was limited to gynecological practices. Of the 200 accessible practices in the study, 103 (51%) reported they planned to ‘manually transfer’ the patient from a wheelchair to a non-accessible high table without the use of a lift. Only 22 practices (11%) reported the use of accessible tables or a lift for transfer. (1)

Disability experts consider the manual transfer of patients to high exam tables to be an unsafe practice, both for the patients and the staff, who undoubtedly suffer injuries trying to lift patients. Why is it that barbershops have had height-adjustable equipment for over 130 years, but modern hospitals routinely do not?

The Need For Change

According to the U.S. Census Bureau, 54.4 million (18.7%) of our nation’s 291.1 million people in the population in 2005 had some level of disability, and 35 million (12%) had a severe disability. Rates of disability also increase with age. By 2030, the number of people aged 65 years and older is expected to increase to 69.4 million from 37.4 million in 2000.

People with disabilities are the largest and most important healthcare consumer group in the United States. But more than 20 years after the ADA was enacted, I’ve learned that it has had a limited impact on how healthcare is provided for this large segment of the population.

Part of the reason for this dissonance between hospitals and the healthcare needs of people with disabilities is the lack of training and education among healthcare practitioners. The National Council on Disability reported in 2009 that the absence of professional training on disability competency issues for practitioners is one of the largest barriers to receiving appropriate healthcare. In fact, the Institute of Medicine and many other organizations have warned that our policy makers and healthcare system have not yet responded to the current healthcare needs of people with disabilities, let alone the projected demographic increase in disability as our population ages.(2)

There are many reasons for this lack of disability competency among healthcare practitioners. Disability training is not a core curriculum requirement for accreditation or receipt of federal funding for most medical and dental schools, nor is it a requirement for hospitals to participate in federally funded medical student internship and residency programs.

Also, federal agencies like the Health Resources and Services Administration (HRSA), the primary federal agency for improving access to healthcare for people who are medically challenged, have not identified people with disabilities as an “under-served health care population”. As a result, there is little federal funding for adding disability competency to medical school curricula, and recent medical school graduates are not eligible for federal loan forgiveness programs if they work with organizations designed to serve people with disabilities.

Perhaps the biggest barrier to people with disabilities getting the healthcare they need is that federal agencies, including Health and Human Services (HHS), the Centers for Medicare and Medicaid Services (CMS), and the HRSA, are not required to document whether those who receive federal funding to deliver healthcare are in compliance with the ADA and Section 504 of the 1973 Rehabilitation Act. Non-discrimination policies are simply passed from the state level in contracts with HMOs, health plans and provider organizations to the health providers with whom they contract for services. Thus, federal agencies, states, HMOs and health plans hide behind the providers, who are subject to the lowest level of ADA scrutiny.

Frustration Leads To Action

Hospitals and medical facilities still have miles to go before making peoples with disabilities feel completely welcome. But they are not going to change unless people speak up by voicing their opinions.

That is what motivated me to launch my own consulting practice and AbleRoad, a website and app that allows people with disabilities and medical conditions – including those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities – and their families and caregivers to review any public space or business, and rate them on a variety of factors relating to accessibility.

And most importantly, AbleRoad is a way for corporate America, including hospitals and medical facilities, to get the feedback they need to become more accessible.

Again, it is up to us to speak out so that experiences like mine and others no longer happen.

Kevin G. McGuire
Kevin is a renowned leader in disability policy, advocacy, and training. In 1991, he founded McGuire Associates, Inc., a leading consulting firm specializing in issues of compliance with Federal and State disability-related laws. Over the past 20 years he has grown his company operation serving the largest construction projects and corporations in the country and internationally.

Passionate about educating the professional world about the disability space, Kevin has conducted over 500 conferences, trained over 25,000 facilities staff people, and lectured widely to conventions, TV audiences, public sector workshops, and corporate compliance executives. He has extensive experience in producing and selling disability-related instructional videos as well as a background in motion picture and television productions, serving as technical advisor and in an onscreen featured role in “Born on the Fourth of July”, a technical advisor in “Gattaca,” and appearing in several daytime television dramas. As a wheelchair user, Kevin’s own spinal cord injury has afforded him a personal appreciation and deep insight into issues surrounding persons with disabilities.

1) Lagu, T et al. Access to subspecialty care for patients with mobility impairment: a survey. Ann Intern Med. 2013 Mar 19;158(6):441-6
2) National Council On Disability. (2009). The Current State of Health Care for People with Disabilities. Washington, D.C. Retrieved from http://www.ncd.gov/publications/2009/Sept302009