By Adria Nassim
Find a Medical Team that Understands Both Visible and Invisible Disabilities
As a person with multiple disabilities including cerebral palsy, a learning disability, and an autism spectrum disorder, I have had both good and bad interactions with health care providers. Many times, I find that the world of adult health care is much less warm and receptive and less prepared to accommodate patients with disabilities and medical complexity than is the world of pediatrics.
Because many of my diagnoses are invisible, I have occasionally had bad interactions with providers who question why certain tasks are difficult for me or say I do not appear to have autism or a learning disability, when in fact, I do. I have also witnessed providers interact with patients other than me inappropriately in an open setting such as a waiting area where the provider discussed the patient’s private health information in the presence of other patients. Additionally, I have heard of incidents involving patients being repeatedly late for appointments, and staff yelling at them in the presence of other patients.
I do not intend for those of you reading this blog post to think I am trying to put down those in the health care profession. I have a lot of respect for those in the health care field and have continued to advocate for individuals with disabilities to be able to have access to quality, affordable care throughout their lives.
I find it helpful to look for a health care provider who is sensitive, compassionate and willing to recognize and work around the challenges some patients with disabilities can have, such as lack of a driver’s license because of medical reasons causing difficulty accessing transportation to and from appointments. Relying on public transportation, which may run behind from time to time, can cause a patient to be late for an appointment. Finding a provider who is willing to be flexible can make a difference as well.
Communication Challenges Create Difficulties, Too
Another challenge patients with disabilities, especially those with a tendency to fall, may face includes inaccessibility of buildings, especially in inclement weather or late at night when visibility is lower.
Patients can also face challenges with communication if they visit a medical practice with staff who have no understanding of the needs of individuals who have little to no spoken communication ability. Individuals may use an alternate form of communication such as pictorial icons, an assistive communication device, or American Sign Language (ASL). It is always a good idea to have someone on staff who is at least moderately proficient in ASL. In addition, even though a patient may not be able to communicate verbally, he or she can still hear and understand. People with disabilities need medical personnel to try their best to communicate in a positive manner with patients and to involve them in the process as much as possible.
Some patients may have sensory processing issues so the prospect of something like a physical exam or vaccine can be very hard due to possible sensitivity to touch. Patients can experience sensory issues in conjunction with any of the five senses. Having a staff member who can ask the patient what accommodations would be best for them can make them more comfortable.
Overall, keep in mind that the patient should always be in control of his or her own health care. I look for providers who can establish a long-term relationship with me as well as provide the care that suits my individual needs.
For Parents and Young Adults: