by Carrie Baatz
What is health care like for people who have severe disabilities? We conducted a qualitative research study1 to find out. People with Cerebral Palsy, Cystic Fibrosis, Multiple Sclerosis, Muscular Dystrophy, Spina Bifida, Spinal Cord Injuries and Paraplegia or Quadriplegia talked to us about their health care experiences.
Many people with disabilities say, “My health care starts with me.” We want to see ourselves as the primary agents of our health care.
What health care looks like in everyday life is different for each person, depending on his or her level of need. Some people need full-time care, while others need support with navigating medical information and appointments. Some people need local access to specialty services. As they have gotten older, some recognize that their life depends on good health care.
- “Health care will determine whether or not I am in a nursing home. Unfortunately, it’s exceptionally important.”2
Despite the significant role that health care plays in their lives, we learned that health care is a stressor for many people with disabilities. There are other obstacles that make it tough to access health care.
Accessible, disability-competent health care is vital. But for people who use wheel chairs, simply getting in the door to a medical office can be impossible. If they can get inside, they cannot expect to be able to use the exam table. It is rare to find accessible exam tables or alternative forms of communication. Several participants said they have not been weighed in years, because their doctors’ office has never had a wheel chair accessible weight scale. In hospitals, the pre-exam equipment is often not accessible. Transferring can be an option for some patients, if there is proper equipment in place. Others go without examinations, because they face a risk for falling and injury when transferring.
- “There are no accessible tables in Colorado Springs, except possibly in the Wound Care Center at Memorial Hospital.”
- “I haven’t been able to get a mammogram, because they are not accessible. I am looking for a sonogram.”
- “There are no accessible scales or tables. The parking lots are not accessible and a pain to get around. There is a rule that if you are 15 minutes late, they will not see you. It takes a while for me to maneuver around their parking lot. I always plan to arrive 30 minutes early to appointments. Access in general is mediocre at best.”
- “A Gynecologist told me ‘We don’t have anyone who can transfer you.’ So, I couldn’t get my female exam. Doctors are afraid of me falling out of the Hoyer lifts at the Wound Care Clinic.”
Dental offices have no accessible exam chairs. Sometimes, providers adapt equipment or transfer patients. More often, patients are unable to access dental care.
- “I have barriers with the dentist. There is no special exam chair. I have difficulty transferring to a dentist chair.”
- “I can’t feel comfortable in dentist’s offices – I can’t transfer. It makes me leery, and I put off going as a result. I haven’t been to a dentist in 10 years.”
On a more personal level, doctors don’t know enough about people with disabilities. There was a strong feeling among participants that their doctors were not equipped to meet their needs because doctors lack the needed expertise about their specific disabilities. Their doctors also demonstrate a need to improve in disability etiquette. If their primary care providers understood their needs, participants said they would reach out to them more.
- “I’ve had many doctors before who would try to shake my hand (when I am unable to use my hands) after over a year of treating me!”
- “Sweat is an indicator that my body is experiencing pain and irritation (it’s an important signal because I can’t feel the pain). My PCP didn’t understand this, a year after my accident.”
Trust is crucial to patients’ relationships with their doctors, and it is too often damaged by inappropriate or inadequate treatment. Some people have to continually second-guess if their doctors are giving them correct treatment. Others reported that their doctors used extreme treatments without clearly explaining them, including surgeries and medications with troubling side effects.
- “I hate going to the doctors because it’s scary and it takes a lot of emotional energy just to get to and from medical appointments, on top of the treatments. I don’t know what might happen.”
- “I am gun-shy, and I feel paranoid about doctors. I try to avoid health care. I’d rather not be on extreme medications or have more surgeries, so I mitigate that by only going when things are severe. I go when I am having a severe problem.”
In other cases, doctors have misdiagnosed problems that resulted in crises. One pervasive problem is skin ulcers, which are caused by pressure on one’s body due to lying in bed or sitting in a wheelchair for extended periods of time in one position. Skin ulcers often result in hospitalization, for months at a time, to manage medically complex follow-up care to keep the skin antiseptically clean until the skin fully heals. Such medical complications are almost always avoidable with proper home care.
- “I had something serious in my hip. Had they done an MRI, they would have caught it. But they just did an X-Ray, so the thing in my hip got worse, and I ended up needing surgery.”
One participant went to a local healthcare organization, and said they were misdiagnosed. “They could not diagnose stroke vs. infection. There was a misdiagnosis, and I was hospitalized for 4 days as a result.” The organization “suggested I go to the hospital to deal with a stroke and MS attack, but it was a tooth infection.”
In Colorado Springs, there is clearly a gap in disability competent medical services, basic physical therapy services and fitness capabilities accessible to people with disabilities. Our participants could only name one single primary care provider, or specialists taking Medicaid they felt comfortable working with in Colorado Springs. People are forced to travel 60 miles out of town to Englewood or Denver, to be seen providers with knowledge of physical disabilities, (like Craig Hospital), because they cannot get the care they need in Colorado Springs.
A lot of people rely on public transportation because adaptive vehicles are expensive (It costs $40,000-$60,000 to buy a wheelchair accessible van). There is a constant “hurry up and wait” experience getting to appointments, because the bus schedules in Colorado Springs constrain time. In some cases, transportation problems prevent people from getting to medical providers when needed.
- “I’ve had to use an ambulance to transport me to the medical provider because I had no other transportation. It costs $700 per trip within Colorado Springs.”
- I wait for an hour or more to see my PCP. Sometimes, my transit back to home will arrive on schedule to pick me up, before I can be seen.”
Living with health care barriers is exhausting and defeating. The gaps in local health care and transportation, added with the inaccessibility and providers’ lack of understanding about disabilities means that people with disabilities struggle to get the care they need, or they go without. Dreams and passions have to take the back-burner when their energy is consumed by the need to survive every day.
Despite their difficulties, we saw many people who were still heartened by their own refusal to give up. People with disabilities talked to us about the new ways they learned to take care of themselves, and how they are making the most of their abilities and resources. They see themselves as self-advocates. To them, it’s vital to speak up, either for the sake of their own care, or for someone they care for.
- “I advocate for myself regularly, or I have others advocate for me. You have to speak up and find a way to get your needs to the top of the pile.”
At The Independence Center, we advocate for solutions that make health care accessible and more effective for all people with disabilities. Check out our video, Improving Health Care Access for People with Disabilities.
This research study was conducted on behalf of The Independence Center and Rocky Mountain PACE, with support from Community Health Partners. Funding was provided by generous grants from The Colorado Health Foundation and Colorado Springs Health Foundation. Their support is gratefully acknowledged.
1The research study included a written survey, on-on-one interviews, and two focus groups addressing: a) the importance such individuals place on improving their health status, b) care seeking practices given their functional limitations, c) experiences with local health care providers, and, d) preferences for an improved if not ‘ideal’ program addressing their unique health and disability needs, provided by disability competent providers.
2Quotes are taken from research participants, and to protect their confidentiality, we kept them anonymous.