Equal Health Care: If Not Now, When?

Why is it taking so long for the health care industry to begin to comply with the Americans with Disabilities Act?

Photo by Christopher Voelker/VoelkerStudio.com

Photo by Christopher Voelker/VoelkerStudio.com

The average person on the street assumes that health care would logically be the first industry to guarantee equal rights for disabled citizens, but nothing could be further from the truth. On the 23rd anniversary of the passage of the ADA, people with disabilities are still getting inadequate, unequal health care. Hospitals, doctors and clinics routinely behave as if they have been given a pass on complying with civil rights laws for people with disabilities. The good news is that in the past decade, legal actions, negotiations and settlements have begun to hold major hospitals and health care administrators accountable to the law. But lack of equitable health care for disabled persons is still the norm.

It’s impossible to assess the exact breadth and depth of noncompliance, but a safe assumption is that the great majority of health care providers in the United States are in violation of the ADA. A study published in the March 2013 issue of Annals of Internal Medicine entitled “Access to Subspecialty Care for Patients With Mobility Impairment: A Survey,”  determined that only 9 percent out of 256 health care facilities reported using height-adjustable exam tables or lifts for transferring patients. Of the eight subspecialties surveyed by Dr. Tara Lagu and her research team, gynecology — at 44 percent — had the highest rate of inaccessible practices.

Disabled complainants in legal actions report that wheelchair accessible scales are a rare commodity, gynecology and mammography equipment for disabled people is either routinely unavailable, unwieldy, or impossible to use, and hospital rooms almost always lack accessible bathrooms or showers. Knowledge of specific disabilities, secondary complications, and sensitivity to unique disability needs are woefully lacking among doctors and staff. All of this adds up to a shocking negligence that at best results in subpar health care, and at worst causes avoidable suffering, severe complications, and shortened lifespans. Yes, death.

And what is even more appalling is the inability or unwillingness of most doctors to provide a simple, cost-effective solution to the problem of inaccessible exam tables. Dr. Lisa Iezzoni, director of the Mongan Institute for Health Policy at Massachusetts General Hospital and professor of medicine at Harvard, is a recognized leader in advocating for ADA compliance. Iezzoni, who was diagnosed with MS more than 30 years ago, writes in an editorial that accompanied Lagu’s research: “Height-adjustable barber chairs are ubiquitous and remarkably similar from small barber shops to high-end salons. Barber chairs with mechanical pumps like today’s appeared in the late 19th Century. Hydraulic pump chairs, invented in 1900, have changed little since.”

Photo by Christopher Voelker/VoelkerStudio.com

Photo by Christopher Voelker/VoelkerStudio.com

While hydraulic barber chairs have been available for more than 100 years, fewer than 10 percent of health care facilities provide accessible or height-adjustable exam tables. Digitized scales built into the floor to weigh institutional laundry hampers are in common use, yet hospitals and clinics refuse to install accessible wheelchair scales. What accounts for this egregious lack of diagnostic and evaluative health care equipment for people with disabilities?

Many critics point to the medical model of disability as the culprit, the overarching viewpoint that pervades our entire culture, and which has its roots in the medical establishment. At its heart is the long held bias that a person with a disability is not as valuable to society as a nondisabled person. Doctors see that person as someone who is damaged and needs to be fixed in order to have equal value. There are exceptions, of course. Many doctors, nurses, physical therapists, researchers and others who work routinely with people with disabilities do so with compassion, understanding and professionalism. But institutional bias has a way of compounding itself as it creeps into and becomes embedded in the fabric of the health care delivery system.

The net effect — for people with disabilities, at least — is that the importance of common medical tools like exam tables and scales are downplayed, perhaps because they have nothing to do with “fixing” the disabled patient. But they have everything to do with maintaining health. Lack of proper examination and diagnostic tools in gynecology and mammography can result in signs of cancer being poorly evaluated or missed altogether. Failure to properly track fluctuations in weight can result in improper dosage of medicines or anesthetics and poor management of heart health conditions. As a result, people with disabilities who are denied access to these basic tools are at greater risk for the two most prevalent and feared diseases in this nation — cancer and heart disease.

What It Takes to Bring About Change
What does it take to begin changing the culture of a major industry that routinely discriminates against people with disabilities? In the case of health care, it took three disability activists, a committed legal team, and a class action lawsuit. The landmark case was Metzler v. Kaiser, in which John Metzler, Johnnie Lacy, and John Lonberg sued the largest health maintenance organization in the nation. All were residents of California and wheelchair users who had untreated pressure sores or lack of adequate diagnostic exams due to inaccessible equipment and discriminatory practices.

I really think it is because there are not enough of us making a fuss. We are considered not very “sexy” people that others want to listen to. We don’t have a strong voice as a minority. But things are starting to change. Now we are starting to be heard.    — Pamela Daly, employee of Greater Boston Chapter, NSCIA, paraplegic

I really think it is because there are not enough of us making a fuss. We are considered not very “sexy” people that others want to listen to. We don’t have a strong voice as a minority. But things are starting to change. Now we are starting to be heard.
Pamela Daly, employee of Greater Boston Chapter, NSCIA, paraplegic

Disability Rights Advocates of Oakland, Calif., led by attorney Sid Wolinsky, and the Legal Offices of John Burris, also of Oakland, acted as attorneys for the named plaintiffs and all others with mobility disabilities who were members of Kaiser Permanente, alleging “systemic failure and refusal to provide the minimum legally-required access to its facilities and its health care services and programs in California.” Allegations were specific and detailed, but in general they amounted to the plaintiffs’ inability to receive “the same level of care as nondisabled Kaiser members,” which put them “at great risk for serious and life-threatening health problems.”

On April 12, 2001, Kaiser entered into a settlement agreement that essentially mandated revamping all of its California facilities at great expense, both for physical and program access. It was the first victory of its kind and was hailed as a blueprint for future legal actions that would bring about widespread compliance.

But progress, while evident, has been slow and widely scattered. Two major urban locations — The San Francisco Bay Area and Boston — have led the way with major legal efforts to remedy health care discrimination for the disabled community. Other cities where legal actions or ongoing negotiations are making an impact are Houston, Chicago, Philadelphia, and Washington, D.C. As of this writing, a similar process is just getting underway in New York City.

A hopeful sign is the ongoing implementation of a structured negotiation involving Sutter Health Care in California. Once again, Disability Rights Advocates, with lead counsel Melissa Kasnitz partnering with attorney Linda Dardarian of Goldstein, Borgen, Dardarian and Ho, filed a complaint alleging substantially the same allegations as the Kaiser suit, with two named plaintiffs — Stephen Olson and Sharon Thompson, both quadriplegics. Two more plaintiffs representing the visually impaired and hearing impaired populations were also included in this action. Sutter Health Care, which owns more than 20 medical facilities, almost all of them in Northern California, is now about halfway through a 10-year implementation agreement. “They have done a fantastic job of improving access,” says Dardarian, who along with longtime disability rights attorney Lainey Feingold negotiated a similar settlement with the University of California, San Francisco Medical Center on behalf of disability rights activist August Longo in 2008.

Our needs and conditions are not recognized. Our lives and attitudes are not worth much, or at least not worth as much. To get the care I need, I have to go into kindergarten mode and explain from A to Z in simple, super-polite, nonthreatening language what I usually do at home. Our society is clueless about how to handle our differences.  — John Kelly, disability advocate, quadriplegic

Our needs and conditions are not recognized. Our lives and attitudes are not worth much, or at least not worth as much. To get the care I need, I have to go into kindergarten mode and explain from A to Z in simple, super-polite, nonthreatening language what I usually do at home. Our society is clueless about how to handle our differences.
John Kelly, disability advocate, quadriplegic

But applying legal pressure isn’t as easy as gathering a handful of complainants. According to Dardarian, it can take from several to as many as 200 additional affidavits alleging discrimination (depending on the size and complexity of the case) to win a legal victory or force negotiations that lead to a settlement. “You have to have a number of people coming forward,” she says. “In the Sutter case, we didn’t have to move for class certification. They were agreeable to settling it as a class action. We didn’t have to fight about it. They conceded.”

It was a different story in Massachusetts. When Greater Boston Legal Services partnered with Boston Center for Independent Living and sent demand letters to two prestigious hospitals — Massachusetts General and Brigham and Women’s Hospital — they met with initial resistance. “First,” says Dan Manning, litigation director for GBLS, “we made them mad. We sent a demand letter to each of the two presidents with affidavits saying we thought we had evidence of noncompliance. The affidavits showed examples of systemic problems at the hospitals, and while we could file a lawsuit, we said we preferred to reach an amicable agreement. Their initial reaction was not very good.”

Photo by Jessica Brandi Lifland When you are sick and going through a crisis, the last thing you want to do is hassle a lot of people.  — Blane Beckwith, quad, vent user


When you are sick and going through a crisis, the last thing you want to do is hassle a lot of people.
Blane Beckwith, quad, vent user
Photo by Jessica Brandi Lifland

Both Boston hospitals are very highly regarded. Mass General is the largest hospital in the state, and Brigham and Women’s is a Harvard teaching hospital. “We were told that they were both angry at the threatening nature of the letters, and they did not believe that these problems were widespread,” says Manning. “We sent the letters in April of 2008 and they didn’t agree to negotiations until October. There was a lot of back and forth.
We wanted structured negotiations that would lead to an enforceable agreement, and they wanted to talk and make vague promises but were not wanting to go further with a legally binding agreement.”

So what finally tipped the scales?

“We gave them an ultimatum that if they don’t agree to structured negotiations, we would file a lawsuit,” says Manning. “Pretty much right away they agreed to negotiate.” It took another eight or nine months to negotiate the specific terms of the agreement.

The Culture of Discrimination
While the majority of major cases have focused on forcing compliance involving physical access to health services and equipment, the most difficult obstacle to overcome is lack of awareness combined with an attitude of paternalism. In the health care industry, there is a culture, a mindset that resents what they see as criticism or meddling, according to Dardarian. “We see this with a lot of medical providers. They can be very imperious. What they feel they do is so specialized that it can become a form of elitism. They are resentful of outside interference, as they see it.”

When this attitude permeates the medical culture, it results in across-the-board behavior that is not only insulting but dangerous to people whose needs are poorly understood, ignored or dismissed.

No one ever provides them with what they need. I thought it was because it would cost them more money.  — Glen Yamashita, quad

No one ever provides them with what they need. I thought it was because it would cost them more money.
Glen Yamashita, quad

Blane Beckwith, 57, of Berkeley, Calif., a quadriplegic who uses a vent, had problems with Sutter employees respecting his experience and knowledge. “Every time I had to go to emergency, they weren’t prepared to accept me because of my ventilator. I could have used my portable ventilator, but they insisted that I use a different ventilator. I would tell them the correct settings, but they would never take my word on anything.  Instead they would try to contact my doctor. I know my vent and how to use it, I’ve been a vent user for 30 years, but they were insulting my intelligence. And it delayed the whole process of getting the care I needed.  Sometimes they couldn’t get a hold of the doctor, so they would try to set me up on settings they thought would be OK, but they weren’t. They were making decisions based not on me and my needs. Vents are all different. If you don’t have the exact settings, you are not going to be ventilated properly.”

Iezzoni has seen this same attitude. “I know a woman, a very experienced person with a disability, who knew how to transfer,” she says, “but the radiology techs refused to listen to her. She was an expert in her own body, but the techs were thinking they knew the best technique. Paternalism wed to their thinking that they have the right education makes for slow acceptance.”

While paternalism is difficult to overcome, ignorance, lack of awareness and proper equipment is more common. All, however, result in inadequate care. Glen Yamashita, 64, also of Berkeley, a C6-7 quad who worked as an Internet tech for Del Monte and the Federal Reserve Bank, encountered a frustrating situation that is widespread in health care facilities. Yamashita, who weighs 210 pounds, was told by one doctor that he could not be lifted on to an exam table that was too high. Another doctor told him he had to bring someone to help, that if he showed up alone he would be refused treatment. “No one ever provides them with what they need. I thought it was because it would cost them more money,” says Yamashita.

Naomi Armenta, also a Bay Area resident, had a similar experience. Whenever Armenta, 40, who has arthrogryposis, went to a doctor, her main need was getting help being lifted on to an exam table. “I had a general practitioner who threw me off, fired me as a patient. I called and asked for a basic accommodation and someone called back and said the doctor couldn’t help me. Another time, with a gynecologist, I brought a small attendant, and he tried to heave me up on the table, and I’d be hanging off the table in an undignified way. I dread when I have to have a mammogram.”

When doctors refuse a patient based on disability or inaccessible medical equipment, it is not only a violation of ADA law, it results in people being reluctant to go to medical appointments, a clear threat to their health. And according to fairly recent NOD-Harris surveys, people with disabilities are less likely to receive the medical treatment they need than nondisabled people.

I think medical practitioners and offices are not in the mindset of accommodating anybody! You go there and they expect you to do what they want you to do. So we get used to being put through the ringer. It’s medicalization. A lot of people are scared to talk back to doctors.  — Naomi Armenta, county transportation commission, arthrogryposis

I think medical practitioners and offices are not in the mindset of accommodating anybody! You go there and they expect you to do what they want you to do. So we get used to being put through the ringer. It’s medicalization. A lot of people are scared to talk back to doctors.
Naomi Armenta, county transportation commission, arthrogryposis

Fortunately for Beckwith, Yamashita, Armenta, and thousands of others in northern California, Sutter Healthcare is now implementing changes. “The last time I went to emergency [at Alta Bates Medical Center],” says Beckwith, “they X-rayed my leg while I was in the chair, and I had my portable vent hooked on. They gave me some pain meds and referred me to an orthopedist. They accommodated.” Yamashita has seen a difference as well. “The three doctors I see now are definitely doing what they are supposed to,” he says. “At Alta Bates they know right away that they have to do whatever is needed. It didn’t used to be that way.” And Armenta now has a different outlook. “Since the settlement started, I have seen an improvement with the gynecological table, the main thing I do regularly. Some, but not all entrances are accessible. My OB-GYN actually changed offices, but I have high hopes that there will be more changes.”

But these success stories are the exception to the rule. Attorney James Bahamonde, 41, a Marine veteran and quadriplegic who practices in New York City, says health care inequities are pervasive. “I got a call from a client just the other day. He has a wound and was told he had to bring someone to transfer him. Otherwise they can’t treat him. That’s like hanging out a sign that says, ‘Disabled people are not welcome here.’”

What Now?
Nearly a quarter of a century after the ADA was signed, legal actions forcing medical facilities and health care providers to comply with the law are only now beginning to have minimal effect on widespread and common health care inequities. A relatively small number of complainants have come forward to make their experiences known, and disability rights attorneys have forced negotiated settlements in relatively few instances. The Department of Justice has brought just two major actions, both in the Washington, D.C. area. Health care for people with disabilities will continue to be inequitable until a groundswell, a critical mass of people, comes forward to make their complaints known.

“Why do people not consider that people with disabilities have civil rights?” asks Bahamonde. “It goes back to the point where disabled people will not enforce the laws, will not stand behind the laws. We are not proactive enough or forceful enough. It all goes back to that issue. If medical providers refused service to someone else, like a Hispanic or a woman, if they put these discriminatory conditions on them, everyone would say that is wrong.”

June Kailes, a longtime disability advocate who was there when the ADA was signed into law in 1990, has devoted most of her life to advocating for change since then. For her, it is a constant battle, no rest. She needs help. “Every time you go to the doctor, tell them what you need. Unless we advocate for it, it won’t happen. If they don’t do what we want, it’s on our heads for not speaking up.”


Importance of Education, Training and Evaluation
While lack of physical access to medical care is the foremost obstacle to receiving equal treatment, programmatic access, training and evaluation are every bit as important.

“It is really about attitude change, paradigm shift, asking for an accommodation,” says Dennis Heaphy, 51, a C4 quad who works as a health care policy analyst in the Boston area. “It isn’t only about getting a wheelchair scale, it is about how to use it, service it, and assist those who need it,” he says.  “Compliance doesn’t result with ‘checking off boxes.’ How do we know if training is enough? Ongoing evaluation is needed. Those providing the care need to understand disability culture. So the point is not just complying with the ADA. It’s about facilitating access to health care. They have to feel comfortable with being around people with disabilities and understand their needs.”

Photo by Christopher Voelker/VoelkerStudio.com

Photo by Christopher Voelker/VoelkerStudio.com

Heaphy speaks from experience, not only that of others, but his own. “In my case, I was hospitalized with a very small sore. If it had not been for a family member, my brother, being there, I would never have been turned or had a bowel program. I would have been left on my own.” Stories of people with spinal cord injuries being admitted to hospitals and acquiring pressure sores while there are commonplace in the SCI community.

People who have MS often have secondary conditions due to neurological damage that is similar to SCI. One person, a power chair user who was admitted to Brigham and Women’s Hospital in Boston for a UTI, wrote in an affidavit, “Because of my MS I am not capable of rolling over and repositioning myself. I am supposed to be turned on average about every two hours so my skin does not break down.
My fever caused me to sweat profusely and it was even more important that I be turned. I also had diarrhea from the medication, which made my condition even worse. My doctors and nurses did not seem to be aware of the fact that I needed to be turned. For the first few days I lay in bed for up to 20 hours at a time without moving, despite the fact that I needed to move my legs for circulation. In addition, the phone was out of reach, the light controls were inaccessible, and no one would help me sit up to eat or position the tray where I could reach it [as I am triplegic].”

Those with osteogenesis imperfecta are also subject to widespread mistreatment due to ignorance and lack of training. Another patient at Brigham and Women’s Hospital wrote in her affidavit, “I asked a nurse to put a note on the wall that said that I was hard of hearing and that I fracture easily. That note was ignored. Nurse’s aides roughly turned me, picked me up, and pulled me up onto the bed without caring about how they were handling me. When I became fully alert again I felt pain in my leg and knew I had a broken bone. When I complained to the doctor on call, the doctor did not believe me when I said how fragile my bones are. The doctor asked me how I knew it was broken. I said I knew because of the pain and the fact that my foot was swollen. Over the next couple of days, I kept complaining and asking my doctors to order an X-ray, which showed that my leg was broken. My leg would not have been broken if my note was taken seriously or if the people taking care of me had paid better attention to my disability.”

Bear in mind that the previous two case histories occurred at one of the most prestigious teaching hospitals in the nation.

Women who are wheelchair users are especially at risk of receiving inadequate health care. One Mass General patient, a 54-year-old T6 para who was diagnosed with breast cancer in 2001, wrote in her 2008 affidavit: “The [exam] tables at my oncologist’s office are neither adjustable nor low enough for me to transfer from my chair onto them. As a result, I usually have my breasts examined while sitting in my chair. I feel like this makes for an incomplete breast exam and increases the chance that something will be missed.”


What Accounts for Rampant Noncompliance?
It’s a combination of reasons. Under the ADA there are no damages, so they don’t have much to lose if they don’t make changes. Also, people with disabilities usually want to be less bothersome, so they don’t want to make waves. You have to be brave enough to take the next step. If more people would take that next step, we would not be as ignored.
— James Bahamonde, attorney, quadriplegic

I really don’t understand it, but I suppose it stems from the classic medical model of disability. Their whole thinking has not gone beyond that, as an institution. They don’t recognize the independence or capabilities of people with disabilities. If they can’t fix the person, they don’t want to deal with the problem.
— Dan Manning, litigation director,
Greater Boston Legal Services

We are viewed as poor health outcomes, rather than people. Within the medical system, everything is focused on prevention of disability and disease, but once they happen, you are put in another category. You are a poor health outcome that wasn’t prevented, so there is no understanding of me being a healthy person. I can be healthy within my sense of myself as a quad. But if they view me as not a full human being, I won’t get the same treatment.
— Dennis Heaphy, healthcare policy analyst, quadriplegic

Although we have had a number of lawsuits and settlements, the effect is like a rock in the ocean. You would think there would be a ripple effect resulting in voluntary compliance, but it’s like they are saying, “When you sue me, I’ll do it.” It’s like peeling an onion. First you have to get their attention. Then they have to recognize and admit the problem. Then they have to commit to do something to correct it. Then they have to actually do it. Then we have to make sure they are doing it right.
— June Kailes, disability policy consultant, CP

Usually with an ADA settlement, the health care facilities have to be dragged in kicking and screaming. And there are multiple factors responsible. Doctors feel they know what is the safest, most effective thing for patients. Combine this with their feeling of beneficence and they feel they are doing what is right. They think their factual knowledge is superior to your personal experience. Also, doctors’ offices are in small facilities, rooms are small, equipment requires more space, and many hospitals are in older buildings. Another reason is finances and reimbursement do not account for people with disabilities and what they need in terms of time and equipment. And finally, quite often, they simply don’t get it.
— Lisa Iezzoni, professor of medicine, Harvard,
director of the Mongan Institute for Health Policy at
Massachusetts General Hospital, MS

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