One of the realities of disabled life is that many of us may need more regular medical care than our able-bodied counterparts. That being said, finding a provider who has the trifecta of an accessible office and equipment, a willingness to work with a disabled population, and respect toward us as the experts on our own lives is borderline mythic. But private and nonprofit health care organizations fall under Title III of the Americans with Disabilities Act (ADA). According to the ADA National Network: “All places covered by the ADA must provide access to their facilities and programs for people with disabilities.”
Having a deeper understanding of your healthcare rights is the first step in an empowered search for a healthcare provider. According to a guide from the U.S. Department of Health and Human Services entitled Coverage to Care: Getting the Care You Need: “[Disabled people] have the right to access to the same medical services as everyone else.” This means care and services shouldn’t be denied because buildings, exam rooms, and equipment are inaccessible. Information should be provided in formats including American Sign Language and Braille. We have, as the guide notes, “the right to reasonable modifications, auxiliary aids, and services.” Additionally, federal laws prohibit discrimination such as making disabled people wait longer, refusing to serve us, or requiring that we bring someone to assist us.
On paper, our right to access medical care services seems to guarantee us seamless care. However, the reality indicates otherwise. We encounter situation including reluctance and refusal to provide care, biased providers, and barriers to care. The following are real life medical experiences from people with mobility-related disabilities. Names have been changed to protect privacy.
Alice lives in a rural area. “We have a physical therapy office within the hospital,” she shares, “but they act like they are only meant to work with able-bodied patients who are having a temporary issue.” This is an issue a lot of disabled people face between therapy offices and insurance. Lifelong disability is just that—lifelong. Whether you have 30 physical therapy visits or 60, the arbitrary number of covered appointments might improve the patient’s baseline, but does little for overall thriving.
Amy has cerebral palsy and uses crutches. As a teenager, she went to an oral surgeon to remove her wisdom teeth. “He told me that because of my ‘condition’ he would have to do my wisdom teeth extraction in the operating room at the hospital,” Amy said. Amy had already had two surprise surgeries in less than a year. “Surgery was the last thing on the planet I wanted at that time, so I deadpanned, ‘what’s my condition, then?’ His face blanched and I got up and walked out without a word.” Now in her 30s, Amy still has her wisdom teeth.
Wheelchair user Felicia was scheduled to have a sleep study. “On every call with the provider, I referenced that I was a wheelchair user and would need assistance transferring from chair to bed to bathroom,” she said. Felicia was assured on every call that there would be a nurse on hand to assist her. “I was dropped off for the sleep study, the tech said that she was ‘just a tech’ and unable to help me in any way…they told me that everyone with a wheelchair brings someone to help, but in my six calls with the facility no one indicated that at all.”
The Coverage to Care guide advises our community to be proactive in finding a provider that fits our needs. According to Ability Together, the first step is assessing access needs: “Consider factors such as mobility limitations, communication needs, sensory sensitivities or any other accommodations.” Research providers that prioritize access that works for you. Ask for an introductory consultation. At that appointment, take stock of the provider’s physical location for accessible features including doorways, hallways, restrooms, and exam rooms. If communication accommodations are necessary, reach out to the office and see if they’re capable of providing interpreters, written materials, visual aids, and/or assistive listening devices. Inquire about telehealth appointments, what equipment and assistive devices would make appointments easier, and whether the doctor and staff are familiar and comfortable with using them. Unfortunately, while the ADA requires providers to accommodate us, if they can prove that an accommodation is an “undue burden” of significant difficulty or expense, they have a way out.
While it seems that the work falls primarily on our shoulders, it’s important to remember that we are the patients and medical care providers work for us. It is okay to state our needs as empowered advocates.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.