Caregiver's Home Companion Caring for someone who has trouble hearing the phone?

Posted: June 30, 2008

Meeting a Constant Challenge

When Getting to the Doctor Is Half the Battle

For the elderly, particularly those with a disability, the path to the doctor’s door may be filled with stumbling blocks. Without help from caregiving family and friends, assistive and accessible technology and medical offices that comply with disability law, these loved ones risk falling behind in their health even before they reach the exam room.

Thomas Hainze, an 84-year-old Texan left voiceless by laryngeal cancer, uses a combination of family and technology to solve his ongoing appointment challenges. His daughter sometimes makes the calls for him, or he logs on to his “My Chart” profile to schedule the next visit by email, “which has certainly made things easier for me,” he says.

At University of Texas Southwestern, where he goes for care, patients can use their My Chart online medical record to make appointments, view their lab results and even remind themselves of their medications.

Recent studies suggest Hainze is not alone among seniors who use the Internet to communicate with their physicians and look up health information, as the digital divide between younger and older Americans that existed in the 1990s begins to close. “But not all websites are created equal when it comes to things like text size, ease of navigation and compatibility with assistive technologies that can help disabled users, says David Baquis, an accessibility specialist with the U.S. Access Board, an independent federal agency devoted to accessibility for people with disabilities.

“Before patients call to set up an appointment for the first time, they may check the website of their insurance company to select a provider, such as a medical specialist,” he explains. “But if the website is not accessible, then they may not be able to read it or interact with it.

Phone trees or answering services can be a specific problem for patients when they are unable to press a button to reach a live voice, Baquis says. He notes that the federal government has drawn up specific standards for accessible voice mail and interactive voice menus for people who are deaf or speech impaired to use with TTY -- text telephones -- used to type and read messages over the phone. Some patients with memory problems may also use TTY to keep track of important phone numbers and conversations with their doctors, other studies have shown.

Then there’s the question of what to tell the doctor when the appointment is scheduled. Whether older or younger, should you tell the scheduler that you have a disability, even if the disability is not the reason for the visit?

“It’s not necessary to tell them unless you have a need that you have to take care of right up front,” says June Isaacson Kailes, a disability policy consultant in California. “But some things are so important that you need to tell them before, the day of, and right when you go in, like if you’re having a mammogram and you need two techs to help you effectively use the equipment.”

Some elderly and their family caregivers may prefer that an unfamiliar doctor know about their disability from the beginning, as a way of gauging the physician’s ability to meet their care needs.

Though elderly, Hainze’s good health helps him navigate the next step toward his visit. “I usually drive myself to medical appointments unless I am physically impaired due to a severe attack of anemia,” he said. His mobility is the exception among his age group. Older patients in poor health, especially those living outside urban areas with public buses and trains, are more apt to stay home or risk driving with poor eyesight, according to researchers.

Once they arrive for their appointments, older patients are increasingly finding accommodations such as accessible parking spaces, curb cuts and waiting rooms big enough for wheelchair users, thanks to the federal Americans With Disabilities Act. But there can be less obvious obstacles inside the office, says Kailes. For instance, how do you fill out the forms handed to you by the receptionist when you have age-related macular degeneration that makes the words a blur? Or balance that clipboard on your lap when you have rheumatoid arthritis?

Of course a family caregiver can help, but don’t be afraid to speak up and find out if there’s another way, Kailes urges. “You can say, ‘I’d like to get forms mailed to me, so I can fill them out where it is easier for me to write,’” she suggests. “Or you can ask for help in filling them out. Or, you can find out whether you really need to fill in their forms or just come ready with a copy of your own records.”

“The biggest challenge for me at medical appointments is to try to be prepared with written information to present the doctor to avoid wasting his or her time,” Hainze agrees. “I also write relatively rapidly and clearly using a small marker board to respond to specific questions.”

Hainze doesn’t usually bring his daughter or other family members to his appointments. In fact, he’s a little unusual that way because Kailes thinks a caregiver can be a good idea, as long as it’s made clear that the doctor should speak directly to the patient and not the family member -- a complaint among some elderly.

Doctors sometimes “assume that they [elderly patients] are stupid or frail, or can’t work or don’t work, or that they’re unable to take care of themselves,” Kailes says.

In fact, a lot of accessibility boils down to “good customer service” and thoughtfulness, according to Baquis. “Let’s say the office assistant writes down the date of my next appointment real small on the back of a business card. That might be hard to read if I have low vision,” he explains. “And it’s not that hard to use a thick marker and write the information on a separate piece of paper for someone.”

Patients and caregivers can nudge physicians to make these little adjustments. “If you’re deaf, or hard of hearing, just say, ‘I read lips, please look at me, and keep your hands away from your mouth.’ Or tell them, ‘My speech is slow and it’s hard to understand, so please ask me questions if you don’t understand,’” says Kailes.

“It should not be assumed that all scenarios related to providing accessibility are difficult and expensive,” Baquis adds. “Attitude can be the greatest disability barrier.”

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