Time to Speak Up

Advocating for Your Healthcare Might Be the Smartest Thing You Ever Do

Man in wheelchair talking to physicianAcross the Internet you can find them: Organizations who are adamantly talking about mobility conditions from cerebral palsy to muscular dystrophy to spinal cord injury. These conversations show how far we've come.

But through the clinical research and advocacy chatter, a huge gap exists. We're still not talking about general healthcare for people who have disabilities.

At the Center for Research on Women With Disabilities (CROWD), Dr. Margaret Nosek knows all too well the healthcare disparities that often arise simply become someone has a physical disability.

A CROWD national study of women with physical disabilities conducted from 1992 to 1996 showed that 31 percent of respondents had been refused care by a physician because of their disability.

And there’s more:

  • Women with physical disabilities said they had a hard time finding a doctor who knew enough about their disability to help them manage their pregnancy.
  • Compared to women without disabilities, more women with disabilities had chronic urinary tract infections, heart disease, depression and osteoporosis at younger ages.
  • Women with disabilities also use public health clinics, specialists and emergency departments at a much higher rate.

The Problem With Health Care

Just why are these disparities so prevalent? Nosek’s theory is that people with physical disabilities, especially women, have more factors working against them, such as preexisting conditions and unemployment or under employment. So, right out of the gate, access to health insurance is a problem. Then there are the issues with insurance coverage, which often does not include maternity care, prevention, medications, rehabilitation and durable medical equipment.

Even if insurance doesn't prevent a person from seeing a physician, it's likely that simply getting into an exam room could be a very real problem for people who use mobility devices.

In July 2010, “Access to Medical Care for People with Mobility Disabilities” was released, which outlines the accessibility requirements for doctors’ offices, clinics and other healthcare providers according to the Americans With Disabilities Act (ADA).

Nosak summarizes the report as meaning that physicians must provide equal access to services in the most integrated setting and are not allowed to discriminate. The guidelines, which went into effect this year, include architectural modification provisions that make access to hallways and exam rooms possible for people who use wheelchairs and also specify that staff must be trained to assist with transfers.

The guidelines are a victory for those who have had physicians exam them in their wheelchairs. Not transferring can mean that physicians are more likely to miss certain medical issues, including pressure sores. In fact, Nosek says that people with physical disabilities frequently do not get preventative cancer screenings and physicians miss problems that could be obscured by disability, such as sexually transmitted infections and ectopic pregnancies.

What Do You Need?

Did you know that women with physical disabilities have an average of 14 secondary conditions? Nosek says that comorbidities are one important reason that primary healthcare services are necessary for people with disabilities.

Center for Research on Women with Disabilities

The Center for Research on Women With Disabilities offers resources such as these to help empower women to take charge of their health care.

In fact, Nosek offers the following statistics: Women with physical disabilities are

  • Eight times more likely to have osteoporosis
  • Six times more likely to have diabetes
  • Four times more likely to have depression
  • Almost three times more likely to have high blood pressure
  • More than twice as likely to be obese.

And those are just the figures for women.

June Kailes, MSW, LCSW, associate director and adjunct associate professor for the Center for Disability Issues and the Health Professions at Western University of Health Sciences in Pomona, CA, and author of the guide “Making Preventive Health Care Work for You: A Resource Guide for People with Physical Disabilities,” says that having a physical disability might elevate your risks for certain conditions or bring them on at an earlier age, especially because of the sedentary lifestyle that goes along with limited mobility. She recommends discussing screenings with your doctor instead of assuming they will do all of the screenings you need.

Be a Self-Advocate

Kailes offers one simple piece of advice for getting optimal care: You get better health care when you play an active role in it.

To do that, first shop for “a physician who is interested in establishing a partnership with you,” Nosek says.

Making Preventive Health Care Work for You

“Making Preventive Health Care Work for You: A Resource Guide for People with Physical Disabilities” outlines recommended screenings, tips for working with physicians and this quiz about your patient style.

Communicate clearly with both the physician and the physician’s staff, Kailes recommends. Plan ahead for any assistance you will need such as transfers and alternative methods of communication. Even if you have been to a particular doctor before, reminding the staff about your needs can help ensure your visit goes more smoothly.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality, to get the most out of your healthcare services, be sure to give your physician all of the details about your symptoms and health history so that you get the most accurate treatment. You will need to discuss personal information, even if it makes you uncomfortable. The agency also recommends asking questions and writing down the information you receive. If you don’t understand what your doctor is saying, don’t be afraid to speak up.

“Have confidence that you know what is normal and abnormal with your body, and don't let anybody convince you otherwise,” Nosek says. “Set up a team of friends, colleagues, relatives—people who know you very well—who could act as advocates should you become unable to advocate for yourself in medical settings. Do your homework before each appointment (that's what the Internet is for!) so you can decide whether or not it's in your best interest to comply with your physician's recommendations.”

When you actually meet with your physician, Kailes says it’s important to ask for what you need and ask questions about issues that concern you. She also says to be an active healthcare consumer instead of waiting for your physician to do the work, present problems in a results-oriented way instead of waiting for your physician to offer a solution, and be respectful but firm in asking for what you need.

Even though the ADA has very specific requirements for physicians treating patients with physical disabilities, there is much you can do to ensure that you are getting the care you are guaranteed by law. Nosek says you must familiarize yourself with the ADA specifications (read more here) and advocate for access wherever you see a barrier.

But of all of these things, Nosek says, developing a trusting relationship with your primary care physician is the one that matters most. “Your ability to thrive, not to mention your life, may well depend on it.”

Download Now!

The Center for Research on Women With Disabilities (CROWD) has developed several online resources to help women with disabilities learn more about preventative health strategies. Download pdf or text-only versions of the following, available in English and Spanish:

  • Physical Activity newsletter
  • Weight Management newsletter
  • Smoking newsletter
  • Depression newsletter
  • Stress newsletter
  • Women Living Well with Physical Limitations
  • Health Risks for Women with Physical Limitations – a full color poster offering statistics on health disparities for women with physical limitations

Also grab a copy of the Center for Disability Issues and the Health Professions’ “Making Preventive Health Care Work for You: A Resource Guide for People with Physical Disabilities,” which offers a list of routine health screenings and the frequency they are needed as well as a risk factor checklist. The organization also offers a guide called “5 ‘G’s’: Getting Access to Health Care for People with Physical Disabilities.”

Need more advice for talking with physicians? Watch these videos at NIHSeniorHealth.com.

About the Author

Elisha Bury is the editor of The Mobility Project. She can be reached at consumer@hmemediagroup.com.