Many people with spinal muscular atrophy (SMA) have spent their fair share of time in healthcare settings. These include doctors’ offices, hospitals, physical and occupational therapy centers, and wheelchair clinics. Many of these sites claim to cater specifically to people with SMA or other neuromuscular disabilities; yet, a lot of them are not truly inclusive or accessible.
Growing up, I spent a lot of time attending various appointments to manage a body with SMA. Thankfully, as an adult, I need to attend fewer SMA-specific appointments. However, despite 20 years of opportunities to change the setup of healthcare practices, I notice many of the same barriers to accessing healthcare now as when I was a child.
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If you are a practitioner or managing a healthcare practice and want to make it more accessible for people with SMA and disabled folks, in general, here are some tips and areas for improvement:
Presume competence: Ensure that the entire office staff speaks to all patients in a communication style that aligns with their chronological age. Staff should presume that all patients are experts of their own lives. When a healthcare provider sees my wheelchair, assumes I’m cognitively disabled, and starts speaking to me as if I’m a young child, I immediately feel uncomfortable and do not intend on returning to that practice.
For people who have high rates of medical trauma, like those of us with SMA, doctors’ appointments can be stressful as is. I should not have to go in proving that I am competent. That should be the assumption until proven otherwise.
Be flexible: Provide individualized care that aligns with the individual’s needs as much as possible. For example, if you usually complete exams with a patient lying down wearing a gown, think about if that’s a necessity or preference for your work. If you can conduct my exam from my wheelchair, moving clothing items as needed, I am much more comfortable in your practice and, therefore, more likely to return.
Medical online consultation and support through mobile applications are essential for wheelchair-bound patients with SMA. Credit: Getty Images
If your state and insurance partners allow it, offer telehealth appointments for routine visits. For someone with SMA, the definition of “routine visits” should be thought of flexibly, too. I have dealt with respiratory illnesses my entire life. I have known how to implement the SMA respiratory protocols that keep me out of the hospital since I was 12 years old. I know how to evaluate my congestion and secretions when I need antibiotics, steroids, etc., and what respiratory equipment I need to use.
As the provider, it is obviously necessary to provide full evaluations and recommendations, but when working with people with SMA who have been managing these illnesses for most of their lives, listen to them. If you can conduct your assessment virtually and provide the necessary medical support to keep us at home, it is really helpful.
A wheelchair user’s perspective: Hire a wheelchair user consultant to give you feedback on the physical space in your practice or, if that’s not financially an option, go around your space in a wheelchair to see what is adequate vs what is problematic. Here are some questions to consider:
Can wheelchair users see over the reception desk? Can they reach the check-in tablet? Are there multiple places in the waiting area where wheelchair users can sit comfortably without people stepping over them? Are most, if not all, of your exam rooms set up in a way that a wheelchair user can stay in their chair and the provider can easily move around them? Is the bathroom large enough for a full-sized wheelchair to spin around, plus an assistant to help with transfers? Is there soap, hand sanitizer, and paper towels at an easy-to-reach height?
Necaasry equipment: Consider what equipment you invest in. Many people with SMA are smaller than the average adult and use electric wheelchairs full-time. Though you may be an adults-only practice, consider having pediatric-sized equipment on hand. Items as simple as pediatric blood pressure cuffs make my doctors’ visits run much smoother.
The ease at which wheelchair users enter your practice sets the precedent for accessibility. Having automated doors is the best way for setting the precedent. If that’s not financially an option, consider leaving the entryway door open during business hours, having a doorbell at wheelchair level, and/or a phone number posted outside for patients to call when they need the door opened.
Sometimes exams can be completed directly from a wheelchair. In the instances where that is not an option, it can be necessary to have a Hoyer lift in the practice for those who need it to transfer. In addition, having an adult-sized changing table in the bathroom makes toileting and specimen collection doable for people like me.
Final thoughts: This is not an exhaustive list of ways to make your practice more accessible for people with SMA, but it’s a good start. If you only have the capacity to take on the first tip, you are still on a helpful path to improving healthcare access for disabled folks. The more you invest in ensuring your practice is accessible and inclusive, the more likely it is that I feel welcome and obtain the care I need.