by Joseph Shapiro
September 13, 2007 12:01 AM
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.
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.