Five Assistive Technology Myths
Often, you’re your own best technician.
“It’s illegal to change CPAP/APAP/BiPAP/VPAP (also known as xPAP) settings yourself.” This myth, which is often applied to other “high tech devices” as well, leaves many people with inadequate settings that can affect both quality and quantity of life.
Your initial settings are often based on somebody’s prescribing habits, a misleading sleep study (how well does anyone sleep in a lab?), and/or an incomplete understanding of the ways that your respiratory support needs change from hour to hour. Plus, pulmonary, cardiovascular, neuromuscular and neurological conditions all progress.
Don’t buy a machine without a data card that you have access to. Sleepyhead is a great cross-platform app if your machine is compatible. But even if you ended up with a machine whose data you can’t crack, enabling the “detailed view” on the screen, if applicable, and tracking your own perceptions of your breathing, sleep and function, can tell you a lot as well.
“Prices for medical equipment are all pretty much the same on line.” Prices often vary by 300% or more. Web sites range from bare bones warehouses to Amazon to insanely-gouging DME (often easily distinguishable by their stock photos of smiling people) vendors. Price-shop till you drop! No site has all the best prices, and quality matters to varying extents depending on categories. Look for coupon codes on home page banners. And read product reviews on multiple sites — some are promotional content by in-house staff or contractors.
“A standard hospital bed is 75” long.” A look at your own bed, a measuring tape and the length of your pillow will demonstrate that especially in a bed in which raising the head is going to make someone slide down, you need to have sufficient length. This conclusion is bolstered by the fact that many people in hospital beds are there because they have limited mobility and need to be repositioned frequently, need special boots to float their heels, etc.
Most people will need 80" (also the length of a queen bed, BTW) and many, especially if six feet plus, will need 84". Each of these sizes will allow for plenty of mattress and bedding choices, so don’t let anyone tell you otherwise.
For a hospital bed, you will want a medical foam mattress, tailored to your level of risk for pressure injury. If you choose an air (static or alternating pressure mattress), make sure you understand its [often lower] weight limits, especially if more than one person is on the bed at times. Some people cannot tolerate alternating pressure cells, so try before you buy.
“Windows computers are best for people with disabilities because they have more alternative input options.” This canard probably got started because it took longer for eye gaze to come to the Mac. But it’s here now.
In any case, most people with disabilities can use something besides eye gaze — many mice and switches can be operated with the head, chin, lips, tongue, a single limb muscle, and of course, in many cases, voice. So unless your eyes are the only body part with movement, you have multiple input options on the Mac, Linux or Windows OS of your choice, as well as on mobile devices.
Unfortunately, “money talks,” and the freestanding, difficult to use eye gaze devices of yesteryear get more share of voice than newer hybrids using everyday laptops. Caveat emptor; shop around, and check in with others who have your issues. Don’t let anyone tell you that you “have” to use something, nor that you “have” to get it paid for by a third party.
“Insurance won’t pay for a seat elevator function for a power chair, nor a tilting shower/commode chair nor [insert object of your need here].” Depending on your diagnosis, your persistence, your clinician’s letter-writing skills (helped by you?) and your payer, often what you consider “logical” is indeed reimbursable.
Ask for a case manager at your plan if you have or will have extensive equipment needs. And try to choose a medical equipment supplier, though insurance networks may limit your choices, who will stay the course.
Assistance with toileting [as opposed to the less “essential” activity of bathing], prevention of pressure ulcers/injuries, and equipment that can “adapt to disease progression” (often saving the plan money in the end) are all good starting points.
Last republished in different form at https://www.tumblr.com on June 15, 2014. Originally published on examiner.com.
