It's not about papers, but people
A top priority for the complex rehab industry in the new year and new Congress will be the reintroduction of the legislation “Ensuring Access to Quality Complex Rehabilitation Act,” which strives to create a separate benefit category for complex rehab technology. In last year’s Congress, this legislation garnered 38 co-sponsors, which provides a good foundation for the industry to build additional support and, ultimately, to get it passed into law.
The first task early this year will be to get the legislation reintroduced in the new Congress, so the advocacy efforts can begin in earnest. We all know as providers, clinicians, consumers, and manufacturers why a separate benefit is important, but how do we effectively convey that message to our legislators?
As a life-long complex rehab technology user myself, as well as a mobility industry veteran and advocate, I've learned that legislation isn't about papers, but people. It’s not just a bill, sitting on Capitol Hill, as School House Rock coined; rather, it’s a people effort, face-to-face meetings and engaged conversation that help legislators begin to understand why a specific bill isn't just a bill, but is truly a personal responsibility to pass into legislation. It’s really about making the subject personal in a way that legislators can relate with and are compelled to act upon.
Fortunately, when it comes to complex rehab technology, it’s truly among the easiest of legislative subjects to personalize because it’s about just that, people. The message that we need to convey to policymakers is that complex rehab technology isn’t an abstract, disassociated fiscal matter, but one that affects the quality of life of millions with severe disabilities and, ultimately impacts society. It is precisely that conversation, in real terms, face-to-face—of how protecting access to complex rehab technology serves both the individual and society—that must be communicated by each of us with legislators.
The fact is, policymakers of all sorts—from our elected officials, to their staffs, to the government bureaucrats managing daily operations for the Medicare program—are real people, with little to no disability experience. A wheelchair to many is four wheels and a seat, with no understanding of the vast array of technology and individual needs. I’ve been on Capitol Hill with well-intended industry advocates using terms like “foam-in-place seating” and have seen legislators completely baffled by the lingo, eyes glazed over. Therefore, for starters, in our advocacy roles, we need to have patience with policymakers, recognizing that they don’t know complex rehab technology, and we must start with the basic fundamentals.
The fundamentals go back to people. We must educate legislators about precisely who uses complex rehab technology. I know that sounds obvious, but too often in our meetings, we jump right to technology, forgetting that legislators may not be aware of those with disabilities overall. A first-person account is truly priceless, where, for example, policymakers can see my cerebral palsy in-person, and it’s unmistakable where the physicality comes in. However, every industry advocate should have a compelling story to share about one with a disability. It’s so vital to put a real face on the subject.
Next, legislators need to know not just what complex rehab technology is, but what it allows. The medical need may be evident; yet, quality-of-life is compelling. Explaining to legislators how complex rehab technology allows one with a severe disability to pursue education, career, family and community is a powerful tool. “Imagine if you awoke this morning, and you didn’t have the ability to leave your home. Imagine if you didn’t have the mobility needed to get to college, to get to work, to attend your child’s soccer games or school plays—where would your quality of life land?” These are the realities that must be shared. Legislators must feel the effect the legislation at hand has on real people, in a very empathetic context.
Lastly, let us never forget to end by explaining the ultimate result; complex rehab technology takes individuals from being on the system, to saving the government money, to actually increasing tax revenue. Provide those in need with the right seating technologies and it’s estimated to save $11 billion annually in health care. Even more, provide someone with the right mobility technology to achieve a bachelor’s degree, and he or she statistically goes from government beneficiary to mainstream employment—that is, a taxpayer. Yes, these are astounding fiscal outcomes, but they’re also even more meaningful quality-of-life outcomes.
Mark Smith is the consumer research and market outreach manager for Pride Mobility Products Corporation, and founding editor of wheelchairjunkie.com. Mark can be reached at firstname.lastname@example.org.