From personal experience, I can tell you that one of the most important aspects of healthcare is having a strong and open relationship with your doctor.  Like many people with disabilities, I’ve seen a lot of doctors over the years.  Recently, I had an experience to which some people with disabilities can relate. I have a speech disability, and, in a well-meaning way, my parents began trying answer my doctor’s questions without giving me a chance to speak for myself.  It became very frustrating because I knew the answers, but I was never given a chance to speak or have the chance to build a relationship with my new physician.  My parents were beginning to take my appointment in a different direction than I wanted to go, so I became fed up and asked them to step out of the room, so I could talk to the doctor unimpeded. They got the hint, and both respectfully quieted down so I could finish my appointment.

Parents do walk a fine line when it comes to attending their loved one’s appointments.  As I said earlier, they help with communication since many people with disabilities are non-verbal or have trouble getting their point across.

“It is critical for people with disabilities to know how to best advocate for themselves in the healthcare system”, said Nicole Kiefer, Regional Director, The Arc of North Carolina. “One role of our Community Navigators is to support people in learning how to ask questions, share their concerns and advocate for what they need”.

Kerri Eaker, Mission Family Support Network Education and Outreach Coordinator gives an example of how parents can support their children with disabilities to get ready for doctor appointments. “My son stated he wanted to be more independent and not have so many people helping him all the time,” Eaker said. “So, we made a goal that he would begin to learn how to make his own medical appointments, take his own medication, and track his daily vitals.”

Eaker continued: “To learn these goals, my son role plays the visit to the doctor’s office before going so he is ready to advocate for himself when he gets in the office. He also takes his care notebook that includes his “Healthcare Passport” and other information that the doctor may need. We are still working on some of these goals, but he has been able to reach some of them, giving him more independence.”

It is essential that patients feel comfortable talking to their doctors.

According to Karen Luken, disability health consultant and advocate, “Some strategies that might help are writing down a list of questions to ask and scheduling appointments with extra time so you have a full conversation, sending your questions ahead, perhaps through a web-based patient portal, organizing key documents so the provider is looking at the most important information and not having to read through page after page of old information; repeating the key discussion and recommendations at the end of the appointment. This is especially important when medications and follow up treatments are prescribed. Misunderstandings lead to medical problems.”  

Research has shown that patients who are strong advocates for themselves and ask questions are healthier.

“People who advocate for themselves are more knowledgeable about their conditions, more engaged in their care, and more likely to make healthy choices that improve their lives,” said Crystal Bowe.  Crystal is both a family physician at CarMont Health as well as a family member of a person with a disability.   

Bowe cited  a BridgePatientPortal study that found that patients who had enhanced support in making decisions about their healthcare had 12.5 percent fewer hospital admissions and 5.3 percent lower medical costs than the control group.

Some doctors are becoming more comfortable treating patients who have disabilities and carefully navigating the caregiver relationship. 

“I love having parents, siblings, significant others, or support staff in the room with the patient. I find that in these visits, it is essential to set the “rules” of the visit up front,” said Bowe. “I acknowledge that in this type of visit, there will be three sets of agendas. The patient has what they think is important, as does the family member, as do I as the physician. I acknowledge this up front and discuss that ALL of us will get a chance to speak, but the PATIENT goes first”. 

As Dr Bowe said, having a caregiver in the room can sometimes make it difficult to talk about a sensitive topic.  Dr. Rebecca Thompson, MD, Family Medicine Physician at MAHEC Family Health Center at Biltmore, tells a story to illustrate how caregivers can change the discussion, sometimes by accident. 

“A patient of mine who does not have his own guardianship but is very verbal – I had assumed that given his total care needs that he was not sexually active. In our new patient appointment, he told me his caregiver could stay in room.  I asked if he was active, he said he wasn’t. The next visit the caregiver did not come back; the patient had symptoms of STD that needed treatment and [I discovered that he] engages in quite high-risk sexual behavior requiring intervention. He had not wanted the caregiver to step out the first time for fear of angering him due to the power differential, and didn’t want to be truthful due to fear of judgment by caregiver.” 

The moral of the story is being a good advocate for yourself will make you a better patient and make you healthier.