Medical Care Often Inaccessible to Disabled Patients

Rosemary Ciotti talks with her doctor, Sandy Caskie. i i

hide captionRosemary Ciotti came to see Dr. Sandy Caskie because her clinic has an exam table that can be raised and lowered, making it easily accessible to patients who use wheelchairs, such as Ciotti.

Joseph Shapiro, NPR
Rosemary Ciotti talks with her doctor, Sandy Caskie.

Rosemary Ciotti came to see Dr. Sandy Caskie because her clinic has an exam table that can be raised and lowered, making it easily accessible to patients who use wheelchairs, such as Ciotti.

Joseph Shapiro, NPR

Finding Accessible Care

  

When Mary Lou Breslin was about to begin chemotherapy for breast cancer, she was told she couldn't get the usual outpatient treatment because she uses a wheelchair. Breslin, a disability rights advocate, fought to get the care she needed.

  

Read Breslin's advice on how to get accessible health care.

Take a moment to consider a basic part of a doctor's office: the exam table. What if you weren't able to climb up on that hard, plastic table with the crinkly, white paper? Frail elderly people often can't, and they need the most medical care. Younger people with disabilities often can't climb onto the exam table, either.

There is a lot of medical equipment that requires patients to stand or climb, and the inability to use that equipment can keep people from getting the medical care they need.

Rosemary Ciotti was diagnosed with thyroid cancer in 2005. It took awhile for the cancer to be discovered, in part because Ciotti uses a wheelchair and can no longer get up on the exam table.

Sometimes a doctor would call in a couple of strong nurses to try to lift her out of her wheelchair and onto the three-foot-high table. But she got dropped and twisted — and a couple of times, she got hurt.

"It was undignified, humiliating," Ciotti says, "and you get to a point where you no longer are as proactive with your health as you should be, even knowing better." Knowing better because, she was a nurse by profession.

Going Without Care

Ciotti started skipping routine doctors exams. The doctors she did see simply stopped giving the woman sitting in a wheelchair the kind of thorough exams she had gotten before she became disabled by an autoimmune disorder.

Research shows that disabled women are less likely to get mammograms and Pap tests. Another study found that those who get breast cancer are less likely to receive standard treatments and are more likely to die.

June Isaacson Kailes studies the issue. She's the associate director of the Center for Disability Issues and the Health Professions at the Western University of Health Sciences in Pomona, Cali.

"For people with a variety of limitations, the old instructions to hop up, look here, read this, stay still, can be extremely difficult to impossible, which means people don't get the procedures done they need," she says.

Kailes did a national survey and found that people with disabilities have trouble using X-ray machines, rehab equipment, scales and scanning devices, like MRIs.

But the most common problem was getting onto a doctor's exam table. Kailes says the tables are particularly troublesome for elderly patients. She says that doctors often think, mistakenly, that they can thoroughly examine a person who is sitting in a wheelchair.

"You're missing half of a person's body when you're only looking at them sitting in a chair," Kailes says. "You wouldn't be getting a thorough examination of your skin, looking for beginning skin changes or small cancers, if you're sitting down. You wouldn't be getting a thorough clinical breast exam. That needs to be done while you're prone."

Kailes has cerebral palsy and uses a power scooter. She has trouble with balance and coordination, which makes the exam table trouble for her. But she goes to the gym three times a week and she can pull herself to a standing position on a treadmill. Unlike a doctor's exam table, it has grab bars.

Finding Accessible Clinics

Federal civil rights laws require medical offices be accessible. But few are, and those rare offices are hard to find. There is no one "clearinghouse of information," says Dr. Kristi Kirschner of the Rehabilitation Institute of Chicago. But people need sources of information to find doctors and hospitals that have accessible equipment, such as exam tables that go up and down.

Instead, Kirschner says, patients are left to figure it out on their own.

"Lot of times (it's) word of mouth and often just calling and talking to providers about whether they work with people with disabilities," she says.

Kirschner helped start a reproductive health clinic at the Rehabilitation Institute of Chicago, specifically for women with physical disabilities. She had heard stories from her patients of how they had stopped going to the doctor because they couldn't get in the door or use the medical equipment.

Kirschner tells her patients to call doctors' offices before an appointment and to ask a lot of questions — the more specific the better.

That's how Rosemary Ciotti found her new obstetrician-gynecologist in Arlington, Va. She made more than a dozen phone calls.

"I asked specifically, 'Do you have an exam table that lowers to ... at least 20 inches?' — which is the minimum that you would need to transfer easily from a wheelchair. This receptionist actually put me on hold and measured it," Ciotti says.

That story makes her new doctor, Sandy Caskie, smile.

"Well that's the kind of people I have working here," Caskie says. "But ... remember, too, that they've seen other people be accommodated. So they knew that we do this all the time."

In an exam room in her office, Dr. Caskie shows the procedure table she now uses for Ciotti and other disabled and elderly patients. With a flick of a switch, a motor raises or lowers the table.

It costs a few thousand dollars extra for a doctor to buy something like this. But Caskie says it's also easier on her: She doesn't have to twist around so much to examine her patients. And, most important, she knows her patients will get the health care they need.

Getting Access to Health Care

When Mary Lou Breslin was about to begin chemotherapy for breast cancer, she was told she couldn't get the usual outpatient treatment. Instead of going to the clinic, getting treatment and leaving, she'd have to check in overnight at the hospital. The cancer center explained that theirs was an "ambulatory center" and Breslin, who uses a wheelchair, didn't fit the definition of being ambulatory. Breslin noted that although she couldn't "walk," she got around Berkeley and Oakland in her power wheelchair.

Breslin is a world-famous disability rights advocate and a founder of the Disability Rights Education and Defense Fund. As an advocate, she knew the health care system providing her care had already been sued for violating the Americans with Disabilities Act. Breslin knew, too, that, as a result of a legal settlement, the system had hired ADA compliance officers, trained to help people with disabilities.

Breslin contacted that patient representative, who helped her navigate the care she needed and helped train employees on how to accommodate a woman in a wheelchair. Breslin's doctors still worried that on rare occasions patients have a bad reaction to chemotherapy and if that happened they would need to lift Breslin onto a bed or exam table. Even then, the solution in Breslin's case was simple. The patient representative had a mechanical lift brought to the chemotherapy center on the four days Breslin had her treatments. Employees were trained in the proper way to use it. As it turned out, Breslin never needed the lift, but she got her chemotherapy as an outpatient.

Once doctors have experience with patients with disabilities, they better understand how to provide care for the next patient with a disability. After Breslin completed her chemotherapy, she needed to start five weeks of radiation therapy. This would be at a new facility and, once again, she worried that she would have to use her legal knowledge to get what she wanted. So she was surprised by the very different reaction this time from the oncologist.

"She immediately said, 'We have to get you on the table every day. What's the best way to do it? Would you prefer we provide a lift and someone knowledgeable how to use it? Would you prefer your own person (to do any lifting)? You tell us what you want and we'll do it.' I must have looked astonished. I said, 'I had no idea this would be made so simple for me.' And she said, 'Well, of course, this is what we do and this is how we manage anybody with a particular need. It's not a problem for us.' I was very happy."

Here are some things that Breslin and others with disabilities have learned to do to get proper access to health care:

Contact a Patient Representative

Call a hospital and ask if it has an Americans with Disabilities Act compliance officer or a patient representative. If so, they can work with a patient to figure out what barriers there might be to health care and how to surmount them. If you're just visiting a doctor's office, ask for the office manager or someone else who can answer questions or act as a patient representative.

Word of Mouth

You can benefit from finding a doctor that already knows how to help patients with disabilities. But it's not like looking up a restaurant online and looking for a symbol that shows whether the place is "handicapped-accessible." There's no such clearinghouse of information on health care facilities. (Breslin has worked with a few health care systems in California to start such directories.) As a result, it's often left to the patient to do the work of finding doctors who are set up to work with patients with disabilities. Make a lot of phone calls to doctors and to other people with disabilities. One place to start is to call a local "independent living center," an education and advocacy center that is run by people with disabilities. There are more than 300 around the country and often someone there will know a provider who has experience caring for people with disabilities. You can find a local independent living center through the National Council on Independent Living.

Be Specific

When you talk to a patient representative or call a doctor's office, ask a lot of questions — the more specific the better, says Dr. Kristi Kirschner of the Rehabilitation Institute of Chicago. If you have difficulty getting onto an exam table, ask if there are exam tables that lower to 20 inches, or if there is a mechanical lift and trained personnel to operate it. Someone who is deaf should ask if the doctor will provide a sign language interpreter or another means of communication. People who are blind can ask to get forms and information on tape or in other formats. Kirschner says people with disabilities can also ask a doctor to give them extra time for an appointment.

Know Your Rights

Breslin says that although health care providers are required to comply with the ADA and other federal laws, many have been slow to follow through. Some doctors complain that it's unclear what they're required to do. Sen. Tom Harkin is trying to clarify that by sponsoring legislation — the Promoting Wellness for Individuals with Disabilities Act of 2007 — that would help establish accessibility standards for medical diagnostic equipment like examination tables, weight scales, mammography equipment, X-ray machines and other radiological equipment. Harkin became a key author of the ADA after seeing his brother, who was deaf, be ignored by nurses at a hospital. Since the passage of the disability civil rights law in 1990, the Department of Justice has settled more than a hundred cases against doctors' offices and health care facilities that were not accessible. In addition, there have been private lawsuits, including ones against major hospitals in California and Washington, D.C.

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