This post is part of the series 14 Questions
, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, Numotion Director of Advocacy Strategy, Justin Richardson interviews Karen Roy, Numotion Brand Ambassador and Ms. Wheelchair America 2019.
Richardson: Tell us a bit about your story. How were you injured and when did your injury occur?
Roy: When I was a sophomore in college at Louisiana State University, I dated a guy named Mike that played guitar in a local band. I went with him one Saturday night after an LSU football game to watch him play guitar with a local blue’s celebrity, and we were held up at gunpoint by two teenage boys as we approached my car. One kid put a gun to my boyfriend's head, and he grabbed for the control of the gun, which caused a struggle between the two of them. At the same moment on my side of the car, one of the boys hit me over the head with the gun and took my purse with the two dollars I had in it. There was some confusion between the two gunmen and kid behind me shot me in the back. The bullet punctured my lung and caused a T10 complete spinal cord injury. After several days in ICU, my first question was, "Can I still have children." He said yes, and that was all the motivation I needed to go back and finish college and complete a master's degree. My kids are now 25, 22, and 19 years old, and they are the light of my life.
Richardson: Where did you undergo your initial rehab and how long were you there? Please tell us about your experience.
Roy: My parents chose Methodist Rehabilitation Hospital in Jackson, Mississippi. The location was excellent for many parents to be able to travel back and forth since my little brother was still in high school. I have worked in the field of physical rehabilitation for almost 20 years, and I have seen many facilities. The rehabilitation I received at Methodist in 1987 rivals the most well-known SCI centers in the country. I learned how to take care of my body and about the latest advancements in technology. It was at Methodist were I found devices to stand with and the functional electrical stimulation bike to keep muscle tone on my legs. I use improved versions of these devices to this day, and they are the reason I have never had a wound, fracture or contracture in 32 years of being paralyzed.
Richardson: Do you believe your inpatient rehab was different from what new injuries experience today? If so, how?
Roy: Before being transferred to a specialized SCI rehab, I had received three weeks of rehab at the acute hospital. There I healed from the initial gunshot wound and chest tube. I had time to gain some muscle and get through the worst of the pain. I was fortunate I didn't have any fractures or surgical limitations. Next, I transferred to Methodist for five weeks of inpatient rehabilitation. There I learned how to perform my bowel protocol and intermittent catheterization. I also learned daily tasks to help me be more independent, including navigating outdoor terrain, popping up and down curbs, going up and down an escalator at a mall, independent car transfers and how to drive with hand controls.
Today, the length of stay for SCI rehabilitation can sometimes be reduced to as little as two to three weeks after being transferred from the acute hospital. Often people are still in significant pain, restricted by braces and may not physically ready to start the real work of SCI rehabilitation. A person with a spinal cord injury today will generally not be in rehab long enough to independently perform many necessary daily tasks. In my past experience as a medical social worker, I have been deeply saddened to see many people with a new SCI to go to a skilled nursing facility instead of discharging home. In my opinion, many skilled nursing facilities have limited knowledge about SCI to assist someone with their new condition.
Richardson: Specifically, how has complex rehab technology changed since your time in inpatient rehab?
Roy: There have been considerable advancements in technology for wheelchairs. The lighter weight frames and tires make it much easier for me to get my manual chair in and out of my car. Pressure-relieving cushions and carbon fiber backs help more than ever to prevent wounds and skeletal changes due to sitting all day. The advancements in eye gaze technology for people with quadriplegia are life-changing for so many people. The robotic arms, seat elevation, and standing technologies help people significantly increase their independence
Richardson: You worked as a social worker before your time at Numotion. What challenges do those who are newly injured/diagnosed typically face when leaving the rehab/hospital environment for home?
Roy: Considering the brief inpatient stays of today’s rehab environment, people are still dealing with the realities of their new diagnosis or injury and are not ready to transition home. They often must fight to get their custom wheelchairs covered due to cuts in reimbursement. With homes have not yet been modified, patients at times are transferred to a skilled nursing facility. These short term stays sometimes become permanent placements. In my opinion, this increases health care costs because even people that are discharged home can be readmitted with wounds or they end up living in long term acute care facilities. Many times, these complications could be avoided if patients received more comprehensive rehabilitation during their first stay.
Richardson: You were crowned Ms. Wheelchair America 2019 and represented that organization until recently when a new Ms. Wheelchair America was crowned. Please tell us about the experience of competing in and ultimately winning that competition.
Roy: Ms. Wheelchair America is a non-profit organization, and its competition is based solely on a woman's history of advocacy. My original goal in becoming Ms. Wheelchair Louisiana was to inform as many people as possible about the health benefits of standing technology. I was able to share my "stand for life" message all over Louisiana. Going to the national competition was just a bonus, and the experience was fabulous. I made lots of lifelong friends that week and learned more about how to be a better disability rights advocate. Winning Ms. Wheelchair America 2019 was the shock of a lifetime and the icing on a great cake! I traveled to twenty-five state and forty-three cities around the country talking to anyone who would listen about the functional and health benefits of standing for people with disabilities.
Richardson: What do you believe to have been the best parts of your time as Ms. Wheelchair America? Favorite places you visited or opportunities you may have otherwise not experienced?
Roy: Meeting the thousands of people with disabilities at the various Abilities Expos across the country was my favorite part. Especially meeting the adorable children and talking to them about advocacy or merely putting my crown on their head for a picture. I traveled to places like South Dakota, Washington, and Hawaii. I played sled hockey when snow skiing and water skiing. Those are just a few of the opportunities came my way as a result of becoming Ms. Wheelchair America 2019.
Richardson: Who have you met as the result of your time as Ms. Wheelchair America has had the most significant impact on you/your life perspective and why?
Roy: I competed against a woman named Barb Zablotney, Ms. Wheelchair Pennsylvania 2018. We became friends instantly, and that has not changed. Barb's mom passed away unexpectedly months after she was paralyzed in a car accident at the age of twenty-one. She was in the depths of depression for ten years after becoming paralyzed. After discovering the Ms. Wheelchair Pennsylvania program she was motivated use her self-advocacy skills to help others in her community. She started working out and lost 100 pounds that she had gained as a result of her deep depression. Barb has taught me how motivating and live changing advocacy can be. She has reminded me of the importance of friendship. Our collaboration showed me the power we have when we use our collective voice. The crown was lovely, but the real prize was the lifelong friendships I have gained from being part of the Ms. Wheelchair America sisterhood.
Richardson: All Ms. Wheelchair America titleholders pursue a platform during their year with the crown. What was your platform, and why was/is it so important to you and our community?
Roy: I mentioned before that FES and standing technology has existed for over 30 years and has improved. I'm furious that more medical professionals don't educate patients on the indisputable health benefits of standing for people with paralysis. There are mountains of scientific data to prove that standing prevents the wounds, fractures, and contractures in people with paralysis. I believe thousands of people have suffered needlessly because these devices are not covered by insurance, and the benefits have not been explained. Payers would rather pay millions of dollars for people to suffer in hospitals than prescribe and cover the technologies readily available. Not to mention the independence standing and seat elevation provide to people who can access the technology. Spreading this message is the fuel that drives me every day.
Richardson: You've had the opportunity to discuss standing devices and meet with influential leaders on many occasions since obtaining the crown. What has been your favorite advocacy opportunity, and why?
Roy: One of the biggest opportunities was being part of a group put together by the ITEM coalition to meet with decision-making officials at CMS about the benefits of standing and seat elevation. I met dozens of Senators and Congressman from all of the country. My representative in the representative on the House side is Congressman Garrett Graves. I met with him and his staff approximately 6 times over the last two years. As a result, he signed on to the manual accessories bill, which will protect our specialty cushions and custom back from competitive bid. This is proof that persistence pays off when it comes to educating legislators about the importance of CRT (Complex Rehabilitation Technology). Advocacy is hard work, but it does have an impact!
Richardson: Please tell us about your family and interests away from advocacy and your work with Numotion. How has CRT affected those interests?
Roy: I have three kids who are all in college at LSU. I spend as much time as I can hanging out with them. We are huge LSU fans and love watching college football. I love traveling, especially to the beach. I am also a big fan of staying at home with my dogs and my boyfriend watching Netflix. My family and friends are my heart, so Louisiana is my favorite place to be. None of these things would be possible if I didn't have a properly fit custom wheelchair. I have many friends who are often in the hospital due to SCI related complications. I know that my excellent health is due to the years that I have persisted in standing and using functional electrical stimulation. I have had three kids, worked, and traveled extensively. None of that would have been possible without the technology I have used over the years. I want everyone with a disability to have access to devices I have used to stay healthy. Sharing this knowledge is also the reason I will continue to advocate for complex rehabilitation technology until my dying breath.
Richardson: What are your thoughts on what our readers can do to help ensure continued access to complex rehab technology (CRT)?
Roy: Everyone that uses CRT and their families must learn about legislation impacting people with disabilities. The technology that we currently use is under threat by budget cuts on both a state and federal level. You can stay informed and involved by going to NCART.US orUNITEDSPINAL.ORG.
Richardson: Beyond CRT, what do you see as the most important issue or issues facing people with disability today, and why?
Roy: The U.S. House of Representatives passed a bill called the ADA Education and Reform Act (HR 620). The bill was neither educational nor reformative. I love the way the government puts fancy names on harmful legislation. The ADA Education and Reform Act would have made it much harder for people with disabilities to request a business made accessible modifications. Senator Tammy Duckworth along with 42 other senators was able to filibuster HR 620 for now. This bill could come up for a vote again in the future. We should all stay vigilant and call you senators if they try to make this horrible bill a law.
Richardson: You now represent Numotion as a Brand Ambassador. Please tell us more about this role and how our readers can learn more about you/follow you on social media.
Roy: My role as Brand Ambassador allows me to interact with Numotion customers and their families in many exciting ways. I post information about health and wellness that impact people with disabilities. The other topics I cover are disability advocacy, adaptive sports, and inclusive family activities. I write blogs containing information that I think will be helpful and interesting to our customers and their families. I want everyone to live their best #LifePossible! You can find my social media pages on Facebook, Instagram, and Twitter @LifePossibleKR. You can also click here to go directly to my blog page.