On Thursday, March 23rd, 2023, the Disabilities &Conditions of Aging Network, hosted by Advocates Personal Care, met virtually to discuss events impacting the Disability community in central Indiana, throughout the State, and beyond. To focus in on a conversation that began during the February meeting, we invited Karly Sciortino-Poulter from the ARC of Indiana to help us better understand the unwinding of the Public Health Emergency and the impact that will have on people who are utilizing Medicaid and Medicaid Waiver services to support and maintain their independence. Of particular interest was the topic of paid parental caregiving for minors with disabilities, and its future as a feature of Attendant Care through the Aged & Disabled Medicaid Waiver and similar services on other Waivers.

Watch the recording of the March session here:

The April session of the Disabilities & Conditions of Aging Network, hosted by Advocates Personal Care, will be held over zoom at 10am on Thursday, April 27th, 2023! While we do try to give everyone a chance to introduce themselves and their organizations, if you would like specific time on the April agenda to share updates about your organization’s activities, concerns, or celebrations, please email Advocates Personal Care’s Outreach Consultant at [email protected].

The Disabilities & Conditions of Aging Network is open to anyone who is interested in, or actively supports the community of People with Disabilities. If you would like to attend the April meeting, please save the link below, or comeback here on 4/27 to utilize the meeting info posted here and click to join!

Topic: Disabilities & Conditions of Aging Network

Date & Time: Thursday, Apr 27, 2023, 10:00 AM Indiana (East)

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We’re fast approaching the 18th anniversary of my survival day; the day I lost both of my legs to severe burns sustained in a car accident during my commute home from work but did not die. October 22nd marks that life altering event for me. It’s been 18 years, and the irony that this happened during National Disability Employment Awareness Month is just hitting me.

Including my college education, I had spent over a decade of my life focused on a career in full-service hotel management. I had experience working for multiple management firms exceeding the standards set by the dominant hotel brands in the hospitality industry. I had the training, and facilitated much of the training, provided by these brands and management firms. I knew March was National Disability Awareness month, but with all of that time engaged with national and multi-national employers and their various human resources offices, I had not heard of National Disability Employment Awareness Month…or, if I had, it had not been given any attention or significance.

To put this into perspective, I did not become aware of National Disability Employment Awareness Month until after I became a person with a disability who was trying to adapt to maintain employment. That’s not really the way it’s supposed to work, though it is not surprising. People with disabilities often get overlooked and represent a largely underutilized, though often highly effective part of the workforce. Despite national efforts to promote employment of people with disabilities dating all the way back to 1945, when Congress passed a law establishing the first week of October as “National Employ the Physically Handicapped Week” which also requested an annual Presidential proclamation. (It’s interesting to note that this minimal social dawning of awareness came so many decades before the Americans with Disabilities Act protected our civil rights to employment).

Understanding that people with disabilities have always been a diverse minority within our culture, one that actually links all other cultures together, it’s staggering how lack of innovation has been a barrier to access, inclusion, equity, and belonging for diverse people with disabilities throughout our history. Employment of People with Disabilities leads to innovation in the way we find different ways to achieve the same goal by asking the question “how can a person with _____ disability achieve the primary function of ______ job?” The more you think outside of the box, the more you promote innovation, which ultimately enhances productivity and improves the bottom line. Employing people with disabilities is a motivator for this process.

Apparently in 1945, someone in the US Congress started to get it. The fact that we got a week at that point, along with an annual Presidential proclamation, was a win. It didn’t stop there. In 1947 President Truman established a committee responsible for coordinating and publicizing events to promote and celebrate the week. In 1949 Congress appropriated funding for the committee and in 1954 they were directed to work with state and local authorities to promote job opportunities for the “physically handicapped”. In 1955 they became a permanent organization.

Recognizing that people with intellectual and developmental disabilities could, and should, be able to work too, just like people with physical disabilities, in 1962 President Kennedy renamed the committee the “President’s Committee on Employment of the Handicapped”. This executive order also significantly expanded their charge by directing them to develop employment opportunities for both the “physically and the mentally handicapped”. Congress then redesignated the first week of October as “National Employ the Handicapped Week”.

Though it was the social term of choice, the term “handicapped” has always had a negative connotation and represents people with disabilities as a social burden. People with Disabilities have worked diligently to remove this word as an identifier for our minority. Perhaps showing sensitivity to this, in 1988 President Reagan issued an executive order renaming and reorganizing the committee into the “President’s Committee on Employment of People with Disabilities”. Congress then expanded and renamed “National Employ the Handicapped Week” to make the entire month of October “National Disability Employment Awareness Month”.

Before, during, and after the civil rights movement in the United States, people with disabilities have been fighting for their right to employment and inclusion in society. We had a week from 1945 to 1988, then we got a month, then in 1990 we got the five titles of the ADA starting with Title 1 which protects people with disabilities from discrimination based on their disability in regard to all aspects of employment. Yet, when I was a student in the mid ’90’s earning my bachelor’s in Consumer and Family Sciences with an emphasis on Hospitality and Tourism Management, the ADA was barely touched on during my Hospitality Law class.

Throughout my career in the hospitality industry, there was minimal focus placed on employment of people with disabilities. No exploration of the benefits that come from hiring people with disabilities, like innovation in the work environment and reduced turnover. Little to no disability awareness training for management or line level staff…despite the fact that disabilities affect over a quarter of the world’s population, which absolutely impacts the service experience and interaction with employees and customers alike. (It’s important to note that the population of people with disabilities is the most diverse minority in the world, a minority that is exponentially growing due to both trauma and natural conditions of aging).

On rare occasions the properties that I would manage might contract with a local service provider who helped people with disabilities find work. More often than not this would be a group home or a day center for people with intellectual and developmental disabilities. They would bring a group of people with disabilities to work for our housekeeping and culinary departments, usually helping with public area cleanliness in the bathrooms, hallways, lobbies, washing dishes, mopping floors, and/or helping in the laundry. These groups would come with a job coach from their organization who was there to support the employee.

Rarely did we see people with physical disabilities through these agencies. When a person with a physical disability did apply for a job, we would interview them, but I don’t remember any training about what we could or could not ask in the interview. I never received any training on how to ensure that we were not discriminating against candidates with disabilities when comparing them against other candidates without visible or disclosed disabilities. If we had any connections to resources to help us with employing people with disabilities and modifying jobs and work environments as needed, I was not aware of them.

Before I became a person with a disability, I never stopped to consider the training that should have happened when we contracted with disability employment and support organizations. Any time the employee had an issue, the department supervisor would look to the job coach to handle it. Instead of communicating with the employee, the hotel staff preferred to work through the job coach, and more often than not, the job coach allowed it. This did nothing to help the employment relationship between the actual employee and their supervisor.

We employed people with disabilities to fill the jobs we had difficulty filling but didn’t want to understand their needs. Not once did I ever receive any training to understand how Autism, Down Syndrome, Cerebral Palsy, ADHD, or any other disability might affect the way an employee receives instruction or needs to modify their process to achieve the primary function of the job. How disabilities might impact guest interaction, whether on the part of the employee, the consumer, or both was never a consideration. Our corporate human resources offices encouraged us to hire people with disabilities because of the tax break the property would receive, not because it was the right thing to do or the best way to fill vital jobs, reduce turnover, and promote innovation. Now, mind you, this was my experience between 1993 and 2008, when I left the hospitality industry to pursue disability advocacy and public speaking. One would hope that there has been improvement over almost two decades, but I’m led to believe that it has been minimal compared to other concepts of diversity.

Since that time Diversity, Equity, and Inclusion have become the major buzz words in the Human Resources realm of corporate business and culture. Diversity hires are a win, Equitable treatment and pay are major selling points, and Inclusion in the business decision making process builds a sense of Belonging for everyone…which has become the newest buzzword added to “DEI” or “DEIB”. Except, once again, disability tends to get overlooked because “it’s a part of diversity, right?”

Disability is unique, because while disabilities are a part of diversity, people with disabilities can’t be included in your diversity unless you are Accessible first. Employment of people with disabilities as a constant, vital, equitable, and inclusive part of your team helps to ensure that you are actually able to achieve those DEIB goals by adding the “A” to truly create Accessible Diversity, Equity, Inclusion, and Belonging for employees and consumers of your operation.

Why does National Disability Employment Awareness get a month? Because people with disabilities are vital to the future life of all operations that function in the public sector as both employees and consumers. People with disabilities are also vital employees to have in state, local, and federal government, as these are often the people whom those services support. Why does National Disability Employment Awareness get a month? A better question is why doesn’t National Disability Employment Awareness get every month?

(Image Description: Jeremy Warriner, a bi-lateral above knee amputee stands on two prosthetic legs with the aid of two crutches attached to his forearms, which are crossed in front of him. He has long reddish-brown hair falling loose over his shoulders. He is wearing a black leather jacket, a black t-shirt with a flame image, and denim shorts. He has a short-trimmed red beard and is smiling at an older gentleman standing to his right. They are standing in front of a pair of glass doors with windows surrounding them letting in bright daylight. The older gentleman is wearing gray pants, a black IU Health Lifeline jacket, aviator sunglasses, and a gray baseball cap. He is smiling and reaching out to Jeremy with his left arm, patting him on the back. The picture is taken over the left shoulder of a dark-haired woman in the foreground).

Due to a trick of timing, I actually received the new legs about 3 days before I wrote my previous blog post “The Trial (Phase 3 Dawning)”. As I alluded to in that post, life has been exceptionally busy, and I am focusing most of my effort on growing Walking Spirit and better defining and promoting our services. This hasn’t allowed for much writing time, even to document the process of getting a new pair of next-gen legs. As a result, the first time that I had to sit down and write a blogpost about the Trial of the Phase 3 Power Knees which was an experience I felt it important to share, was a few days after my family arrived in South Haven Michigan for a week of vacation.

Sitting on the screened in deck at our almost accessible vacation rental a few blocks away from the beach, I was finally able to put my thoughts together to share that experience. As I wrote about the trail period for me to test the knees, which had taken place a month prior, my new Phase 3 Power Knees were leaning in the corner of our room waiting for me to don them for dinner. Of course, as I wrote the blog post my wife was waiting for me to put on a swimsuit and head to the almost accessible beach, so that would need to come first.

Less than a week before we left to go to South Haven, I was sitting at home anticipating the day’s appointment to get my new sockets made. This is part of the process of getting new legs. If you’re lucky you only have to get new sockets every 5-8 years, on the same cycle as your prosthetics, but that requires maintaining your weight within a 10lb range, so the fit doesn’t change drastically, which can lead to pain and difficulty walking. The process of making new sockets can take weeks. If done right, the fastest it’s taken in the last 17 years has been a two-week process of casting, fitting temporary “check sockets”, and making the final carbon fiber sockets. Also, the sockets come very high up on the outside of the hip, flare out around the top, and traditional mode of thought has been that for proper suspension they have to provide “ischial containment”, which means that they come all the way up to the butt-bone. They are uncomfortable and restrict motion. Recent changes in socket technology have led Ossur, the manufacturer of my Power Knees, to develop a proprietary sub-ischial socket called a “Direct Socket”.

Instead of using carbon-fiber, the direct socket combines fiberglass and epoxy. The socket does not come as high up the hip and has a flexible rubber brim at the top instead of flared plastic. Arguably the best part, it’s molded directly onto your residual limb in the office and is ready that day! I had heard about these sockets and was interested in trying them out It was my hope that the new design would provide enhanced comfort and mobility over the traditional sockets. Knowing that my Prosthetist is very traditional, I risked asking for the opportunity to try the sub-ischial direct sockets and was surprised when he agreed.

Though we had been given approval for the new legs from my insurance company, I knew there were some supply chain issues holding things up…specifically the feet they wanted me to use. After a few weeks had passed from the Phase 3 trial, my Prosthetist reached out to schedule the Socket fitting. I was really looking forward to this aspect, and he had decided to move forward, whether or not we had the new legs yet. On the morning of the appointment, he called to let me know that “only one of the kits” had arrived to make the new sockets. Did I still want to come in to make one socket or wait until he could make both of them? Oh, and the new legs were in so, did I want to go ahead and get them and put them on the old sockets? (He didn’t want me walking on two different styles of sockets). I told him he’d buried the lead, and yes, I was still coming in! I was getting my new legs that day!!!

By the time I arrived, he’d “found enough parts” to make the second socket, so today was going to be the full delivery day! We had thought this was just a socket fitting, which was exciting in and of itself because of the new style, but coming home with the legs was going to be quite the surprise for the family. Irena was going to be disappointed that she wasn’t there for the appointment, as she is great for documenting these events! I was already planning to not have my legs on and send her out by the fire in back when she got home, then put them on and walk out to join her.

First, of course, came the process of making the new sockets. Where usually there are a whole bunch of measurements taken and then casting and possibly 3d images to make the mold that the socket will be made on, this was completely different. First a liner similar to the one I wear under the sockets was put on my leg, then thin membrane like liner was put over that, followed by a connection plate at the end for my legs and 6 layers of fiberglass, the one-way valve for the suction socket was put in place, then another thin membrane liner on top of everything. These layers were smoothed over my muscles and then strapped over my opposite shoulder to keep the materials as tight as possible. Then a tube of epoxy was connected and injected into the material between the two thin membranes. As the epoxy was injected, my prosthetist spread it out evenly around my residual leg. The epoxy was warm and hardened within about ten minutes. After the socket was hardened, they removed it from my leg and took it in back to clean, smooth, and polish. For two sockets it was about a four-and-a-half-hour process!

Once the sockets were finished, they were attached to the new knees, and I tried them on. They fit like gloves! The big test was going to be whether or not I could walk without the reinforcement to my left hip that the ischial containment sockets had provided. As a result of the burn trauma, abnormal bone had grown inside of my glute-mead, a muscle that I needed to walk. 16 years ago, one orthopedic surgeon would not operate on it, fearing that I would not be able to use a prosthetic…even though the bone was currently blocking my range of motion which was causing issues with my use of a prosthetic. A second orthopedic surgeon asked for x-rays and decided he could perform the surgery. Over a cup of abnormal bone was removed from my left hip. It’s never been an issue, but I was concerned there would be a weakness in my left hip without the rigid sidewall of the former socket. I took my first few steps and those concerns were gone, though the hip will give a little if I’m being lazy, it is plenty strong!

The next hour and a half was spent aligning the legs and the new feet. During the trial I experienced an issue with the right knee moving on its own in standing phase, just slightly, but enough to alter my stance. This made finding a “quiet standing” stance where I can balance without needing the crutches challenging, to say the least. We tracked it down to the position of my “ankle” being different on the feet we used at the trial from the position on my usual feet. The ones that I tested were shorter, with less spring to them. The spring on this new set of feet is taller and moves that ankle from the back part of the heel a little more forward and also higher above the foot, which seems to have alleviated the issue.

The unfortunate thing is that they also make me taller, possibly even taller than my last pair of legs. I haven’t been within 6 inches of my original height for 17 years! The trial feet got me close, but the energy return and stability provided by this set is worth it, I just have to find my balance point again. On delivery day we never quite got the alignment to that perfect “quiet standing” position, but we got it as close as we could. My prosthetist had given me 6 hours of his day and it was time to wrap up. After my third alignment I felt more confident, so we went with that set of adjustments. I took my legs off and my prosthetist and his partner went over every screw, applying locktight and securing them in their positions.

Then, when I went to stand up, I encountered my first issues. Not sure what happened, but when I leaned into the knees to get up, they didn’t respond. There was no lift. This was exceptionally confusing, almost like the sensation of something having been stolen. I tried again and there was a delay but the lift assist kicked in. I was up, and the team was clearly exhausted. They were ready to leave for the day, so I decided to chalk it up to my own dwindling endurance and not moving my body right to trigger the sit to stand mode properly. I took a few steps and realized the right leg was not turned on, which was odd because their power buttons flash bright green and I had looked at them before attempting to stand. In the process I had leaned against the frame of the exam plinth, so must have accidentally shut it off somehow.

We reactivated the leg and I said my goodbyes. I had no issues sitting down into the car. The drive home was comfortable, without an inner plastic socket digging into my belly. Irena called and asked how the fitting went. I told her “longer than expected, but really good!” I couldn’t stop raving about how comfortable the sockets were, but didn’t mention the legs. She was going to dinner with a group of friends, so I still had time to get home and get a fire going for the evening! Then she asked if they had said anything about when I would be getting the new legs. “We’ll talk about that at home” was all I could think of to say. After getting home, before getting out of the car, I took a picture of how much more flexibility the new socket design had restored for me!

When I got home, I was disappointed to discover that I was still having issues with sit-to-stand. For some reason I was having to lift my hips to get the function to trigger properly. Normally, it required a load of the toe while simultaneously moving the knees forward, but no lift…that sort of defeats the purpose of the lift assist. I went inside, took my legs off, and got the fire going for when Irena would get home. When she finally came in, I directed her toward the back yard and told her I would join her outside in a few minutes. She went out and I circled around to our bedroom, which has a door to the back yard. After getting my legs on, I walked out onto the deck off our bedroom and down the ramp toward our firepit area. She heard the tell-tale robotic motors of my knees and turned, stunned as she said, “are you walking?!”

I was a bit timid on that first walk outside, and part of that was the issue with the sit-to-stand affecting my confidence. I reached out to my Prosthetist, and he reached out to the local rep for the manufacturer, who had a tech meet us at the office the next morning. Come to find out, these knees (which were brand new and not the exact pair that I had tested) had not been told that I was a bi-lateral amputee, so each knee was looking for the physical support that it would get from someone with a sound leg on the opposite side. Due to a tech issue, that information had not come across when they downloaded the programming from my trial day a month prior. Once they activated the bi-lateral setting, the trigger point for the sit-to-stand function changed to only require a simple forward motion in each knee and they lift! With my previous set I typically was only able to trigger both knees about 40% of the time. Usually, the right knee would trigger, and the left knee would follow along. It’s an amazing sensation to consistently stand up with the full assistance of each knee!

Since then, my usage of my legs has increased. They truly are game changers! I’ve climbed steps instead of taking ramps…a straight line is once again the fastest way to get someplace…I’ve sat in the row above the accessible seats with my friends and family at the movies (because the accessible seats typically only allow room for two), and I’ve stood on my legs for 45 minutes rearranging collectibles around on the high selves on my office. As I use them in my adaptive karate sessions, my balance and range of motion is steadily improving. I don’t know if these will lead to “unassisted walking” (which just doesn’t seem safe to me) but I’m not closing the door.

So much has been going on over the past few months that I’ve not been able to find time to write. This post is long overdue. The month of May was dominated by multiple Graduation ceremonies and celebrations. Two college and one high school…all in different locations with varying degrees of accessibility, but that is a story for another time. In the middle of seeing our beloved students move forward to their respective next steps, I took several of my own.

First, from a professional standpoint, I decided it was time for a change, time to try something new, time to focus on my own goals. As many of you know, I have spent the past several years providing freelance Outreach Consulting & Support Services to first our local non-profit Center for Independent Living, and then second to a for-profit home health care company that provides Medicaid Waiver services. While both were important experiences, and I found a great deal of fulfillment raising awareness of the non-profit’s services, I struggled tremendously with promoting a for-profit organization that had no qualms denying services to people in need whom they viewed as a liability risk…for whatever reason…which was well within their rights to do, but it made my work quite frustrating. As our contract came to an end, I took stock of my goals and decided that it was time to refocus Walking Spirit & Spirit Therapies, LLC on it’s original mission, to enhance the accessibility of our communities through providing Accessible Diversity, Equity, Inclusion, & Belonging consultation & support services.

I’m taking a risk, giving up guaranteed monthly income that has supplemented my SSDI, and trying to make Walking Spirit & Spirit Therapies, LLC truly sustainable, which ultimately means letting the Disability benefits go. While there are incentives in place to help People with Disabilities make this adjustment, due to the way I initially returned to work after the accident, and a lack of understanding regarding these incentives and their timetables, most of my incentives were exhausted years ago. Once Walking Spirit makes more than $1470.00 in one month (a number that actually adjusts based on my disability related expenses which I can write off of Walking Spirit’s income to come in under that cap), my monthly disability income will be cut off. My only incentives are that my Medicare coverage will continue for several years (assuming I can pay the premiums), and I have a five-year expedited reinstatement period if Walking Spirit fails. This bi-lateral above knee amputee is taking a leap of faith off a steep cliff and aiming for a moving target.

As we were preparing for the month of Graduations, and I was taking steps to refocus Walking Spirit, I received a call that even more was about to potentially change. I had reached out to my Prosthetist about the fact that I needed new liners (the silicone sleeves that roll onto my residual legs and create the suction inside the sockets that hold my prosthetics in place), that I was starting to have consistent issues with the batteries in my legs and power failures during the Sit-to-Stand process, that the ankle rotators were no longer consistently returning to neutral when I would unweight, and that I would like to eventually like to try the new “transfemoral” sockets that I had begun hearing about from other amputees…none who were bi-lateral (like me), but they were raving about the improvement in comfort and flexibility provided by sockets that did not come all the way up the hip. I was curious if this would be an option for me to try and knew this might be an uphill battle with my Prosthetist, as he has a very traditional and effective approach to fabricating “ischial containment” sockets that provide very stable suspension.

To my surprise, he responded that yes, he would be willing to try the new socket method, which he had received training on, but before we did that, he wanted to connect with the manufacturer of my legs to address ankle rotators (which are part of the feet) and the power failure issues. Very shortly after that conversation he sent me a message that Ossur, the manufacturer of my “Phase 2” Power Knees, which are eight years old now and long out of warranty, wanted me to test out the new “Phase 3” Power Knees, which had been on the market for about a year. The date for a trial was set and I began reaching out to my doctor to ensure that all of the issues with my eight-year-old set of legs, that cost $150,000 for the pair, would be well documented in his notes from my appointments. Ossur wanted me to get prior-authorization for the new knees before the trial so that they could give them to me then and there if I liked them. Communication between my Doctor and my Prosthetist and my Insurance company began (with me interceding from time to time to keep things moving), but it was highly doubtful that we would receive prior-authorization before the anticipated trial date.

The day arrived, we still didn’t have authorization, but it was time to test the next-gen evolution of my current legs! While the Phase 2 Power Knees provide a great deal of stability, safety, and consistent gait when walking, what has made them so effective for me has been their robotic functions, which actually provides a functional lift assist when going from Sit-to-Stand. This one aspect of the Power Knees has spared my shoulders and back years of excessive wear and tear! There are other functions that are more effective for a Unilateral Above Knee Amputee, like the stair-ascent function, which engages the lift assist in a consistent cadence to help someone climb stairs; but the amputee has to move at the speed of the knee to climb the stairs, not the other way around, and while I could demonstrate the lift assist on a short flight of stairs, this was never truly functional for me as I had a second prosthetic to safely place on each step before I could advance to the next one. I just couldn’t keep up with the cadence of the knee that was in stair-ascent mode and eventually it would time out while I was mid-stair, leaving me to stiff-leg the rest of the climb. Stair-descent has also been a challenge, as it would frequently get confused and instead of lowering me to the next step, the knee would frequently stay stiff, not understanding what I wanted and preventing me from lowering…requiring a mid-stair change in my approach to descend.

Irena Warriner (who had been my fiancée when I first tested the Phase 2 Power Knees) and I arrived at my Prosthetist’s Office to find a team of 4 people from Ossur ready to work with me, in addition to my Prosthetist. They were all giving their workday to me, and I do appreciate that gift!

The “trial knees” were already fully charged and waiting for me in an exam room. I assumed that this was a set that regularly traveled around the country with the team, but later learned that they were a brand-new pair that no-one else had worn yet…they were really hoping that we would get that authorization from my insurance company before the end of the two-day trial period so they could leave me with the upgraded legs. They disconnected my Phase 2’s from my current set of sockets and had the Phase 3’s attached in about five minutes. It was time to stand up.

I leaned into the knees and was rewarded with an immediate lift from both legs into a standing position…even easier than with my Phase 2’s. Typically, I would get my right leg to trigger the lift assist, which requires a simultaneous load of the toe and forward motion of the knee to trigger the lift, and my left leg would follow…rarely triggering fully due to the shorter residual limb on that side, which always made loading the toe difficult. On the first attempt with the Phase 3’s I felt what support from a fully lifting left knee actually felt like! The next test was to sit back down.

Moving from Stand-to-Sit has been a challenge for a long time. It took me about 6 and a half years to figure out that if I staggered my right foot forward of my left, I could engage the Stand-to-Sit function on the left leg easier and the right leg would then follow, providing stable resistance while I’d lower my hips into a chair. I tried to do this and immediately noticed that I was not as stable in this position as I usually feel in my Phase 2’s, and I was not able to engage the Sit-to-Stand function at all. Using their I-Phones, two of Ossur’s reps dialed into each knee and adjusted the “trigger-points”. As a result, I was able to sit down, though still encountered some issues with stability due to the smooth surface of the floor tile. We would play with this for the next several minutes, standing up and sitting down repeatedly until it was at a point where I felt I could practice it over the course of the remaining trial period. Now it was time to walk.

There was a brief discussion about manually setting up the walking functions or putting the legs into an “auto-learn” mode to allow them to self-adjust to my natural gait and speed. We opted for auto-learn, and I moved out into the hallway. I walked up and down the hallway a few times and the legs learned how I moved and programmed themselves, we then fine-tuned that programming over the next several walks. The advancement in the technology was amazing and easily felt! The Phase 3’s were more intuitive than the Phase 2’s, I could adjust speeds smoothly, and each leg was 2 pounds lighter, which does make a difference…I literally felt lighter on my feet!

Speaking of the feet, the ones we used in the trial were a little less responsive than what I was looking for and the ankle rotators didn’t seem to give me much rotation, if any. The feet were shorter, which was nice…for the first time in 17 years I felt closer to my natural height, but we figured out that their alignment was causing a balance issue that would need to be addressed with the final configuration. Next it was time to test the more advanced functions.

We discussed Stair-Ascent and Descent, and the Ossur reps informed me that those functions were not “indicated” for Bi-lateral Above Knee Amputees, but because I had experience with the Phase 2’s, they were curious to see what I would think. We agreed to activate those functions in the right leg, as that is my longer and more confident side. I approached the clinical set of steps in the office to test it out. Activating the Stair-Ascent mode was easier than in my Phase 2’s and I was pleasantly surprised to discover that they allowed me to climb the steps at my own pace, and I reached the top of the 6-step flight easily. What was a fun little gimmick for me to demonstrate for PT students with my Phase 2’s had actually become functional with the Phase 3’s! We played with this for a few minutes and adjusted the “thrust” of the knee to a setting that I found most comfortable and then went outside to test some obstacles like curbs and slopes. While in the parking lot I also demonstrated a somewhat sloppy karate Kata (one with no kicks) to test my balance and range of motion. (Check out the new Adaptive Karate page on my website to see more adaptive Kata demonstrations w/the Phase 2’s and my wheelchair).

https://youtube.com/watch?v=ueiIPUh0laA%3Fautoplay%3D0%26mute%3D0%26controls%3D1%26origin%3Dhttps%253A%252F%252Fanacrusisproductions.wixsite.com%26playsinline%3D1%26showinfo%3D0%26rel%3D0%26iv_load_policy%3D3%26modestbranding%3D1%26enablejsapi%3D1%26widgetid%3D65

After putting the legs through their paces, it was time to test them in the real world. I said good night to my team, left my Phase 2’s at the office, and Irena and I decided to stop by my parent’s house to let them see the next-gen legs. Instead of parking in their garage and utilizing the ramps and board walks that had been added for me to access their home without dealing with steps, I parked in-front, climbed the 13 steps up the front hill, then the 3 steps up to their porch, stepped over the raised threshold into their living room, turned left and then climbed the 20 or so steps to the second floor of their home, where I then visited my childhood bedroom and stood at my window looking out at their backyard for the first time in 15 years! (The last time I had attempted this was with my first microprocessor-controlled prosthetics (C-Legs) that did not have the lift assist, and I had decided I would never attempt climbing those steps again). The Phase 3 Power Knees changed the game.

As I began the descent, which the knees handled consistently and fluidly with every step, our neighbor from next-door came over…he had seen me going in through the front of the house and wanted to see what was up. He watched me come down the very steps that he had helped carry me up nightly, 17 years ago, while I was convalescing at my parent’s home after the accident! I was not worn out, I needed to rest and drink a cold coke, and then walked out and down the steps to head home. We also went out to dinner and met some good friends that night, where I continued to test and become more acquainted with the Stand-to-Sit and Sit-to-Stand functions, the latter of which performed much better in public.

https://youtube.com/watch?v=m_k1utE7Onw%3Fautoplay%3D0%26mute%3D0%26controls%3D1%26origin%3Dhttps%253A%252F%252Fanacrusisproductions.wixsite.com%26playsinline%3D1%26showinfo%3D0%26rel%3D0%26iv_load_policy%3D3%26modestbranding%3D1%26enablejsapi%3D1%26widgetid%3D67

The following day I took them back to my Prosthetist’s office and we tweaked the programming a little more. Then, at the end of the trial-period, as we had not received authorization from my insurance company, I watched as the Phase 3’s were removed and my trusty Phase 2’s were re-attached to my sockets. They saved the settings from the Phase 3’s onto an I-Pad in the Prosthetist’s office, to wait for authorization and the actual delivery day. They packed up the Phase 3’s and I said goodbye to the team from Ossur as they left the office and took what could have been my new knees to Texas for some other amputee to tryout. They had given me such attention that they were pressed for time to make their flight.

After they left, my Prosthetist made certain that all of the connections on my older set of legs were tightened and ten minutes later we checked with the Office Coordinator to see where we were with communication with my insurance company. Her response: “They just emailed the authorization”…and the waiting game for all of the necessary components to make the new sockets, another new pair of Phase 3 Power Knees, and a different set of more responsive feet began.

It has been and continues to be an honor to facilitate the Disabilities and Conditions of Aging Network focused on issues and activities that impact the Disability Community in Indiana. April’s session had a loose agenda, giving each organization present the opportunity to share their updates. Included in the video is information pertaining to upcoming meetings where you can get questions answered regarding the unwinding of the Public Health Emergency and it’s impact on Medicaid and Medicaid Waiver Services for people with disabilities and conditions of aging.

To connect to the “Ask the ARC” webinar series to get answers about the unwinding of the Public Health Emergency and its potential impacts on the Disability Community, and other issues follow the link. FYI, the May 11th session will focus on the PHE: Webinar Registration – Zoom

If you are interested in future meetings of the Disabilities and Conditions of Aging Network, please email me at [email protected].

Towards the end of March, I noticed a headline about a Civil Rights Activist suing a Hotel for ADA violations who was arguing her case before the Supreme Court. I read the article and found myself, once again, realizing how much my perspective on our world has changed since I lost both of my legs. When I worked in the hotel industry, the Americans with Disabilities Act was barely mentioned in school or workplace training beyond understanding what’s different about the “handicapped rooms” (a term that now aggravates me beyond belief) and where the “handicapped parking” is located (same aggravation, though I once casually used these terms myself with careless abandon). There was no emphasis placed on why we were required by law to have these features. There was no attempt to empathize with the travelers whose civil rights these features are meant to protect. There was, by and large, no exploration or education in accommodating diverse disabilities in the public hospitality environment.

The next morning, I received a message from a friend in Colombia who knew I used to work in the Hospitality Industry. He had seen the same article and asked if I’d be willing to share my thoughts as both a person with a disability and a former hotel manager. The Saturday after the US Supreme Court was supposed to hear the case, I sat down and recorded my opinion over zoom. I have since been watching for confirmation that the hearing happened but have found nothing. It does appear that there may have been a continuance issued for the time being. The last thing I found said that the case had been added to the Supreme Court’s docket and would be heard in the fall with a decision expected early next year.

Completely unaware of how long I was going, I spoke for over 20 minutes. My friend edited it down to about 14 minutes, which you can watch in the video below. I cover most of the details in the video, but to make a long story short, a woman who is blind and uses both a cane and a wheelchair, tried to make a reservation at a hotel in Maine, but they didn’t have accessible rooms in their online inventory for reservation over their website. On the surface, this appears to be a violation of the 2010 updates to the American’s with Disabilities Act. (When the hotel was built and when/if any major updates have taken place does impact that). I don’t have that information, but the plot thickens in that the Plaintiff has filed over 600 similar lawsuits against hotels around the country. The hotel company involved in the current case claims that the Plaintiff had no intent to stay in their market and was just looking for someone to sue, so has sustained no actual injury. The case was initially thrown out due to lack of standing, but the appeals court recognized her right (and I would argue her responsibility) as a Person with a Disability to enforce the ADA. That’s how the case has come before the US Supreme Court, for a final decision on her right to sue the hotel for ADA violations, regardless of her intent to stay at the hotel or in their market.

I do hope that you take the time to watch the video. Please know that over six minutes were edited out. Missing from the video is a statement regarding how I feel about the way the Plaintiff has chosen to go about holding hotels accountable for complying with the ADA. I don’t like the concept of “drive-by lawsuits”, which this certainly feels like, but when you look at it from the perspective of someone with a disability looking for a hotel room that can accommodate them, the more accessible the hospitality industry becomes, the easier it will be for people with disabilities (who make up a quarter of our population) and their families to travel. I have chosen to go the route of offering consulting services to help the hospitality industry, and really any organization that serves the public sector, to embrace and adapt to Accessible Diversity, Equity, Inclusion, and Belonging as a vital aspect of their business operations, which will help avoid ADA related lawsuits. Sadly, my experience so far has shown that more businesses would rather risk a potential costly lawsuit than invest the money upfront in training and modifications that would avoid the high dollar damages and settlements. Please refer any organization you encounter who could benefit from this kind of evaluation, consultation, and training to reach out to me at [email protected].

Starting off the last week of Disability Awareness Month, I give you a glimpse into what dating with a disability looks like… The picture below, taken 8 years ago, shows Irena and I in a lazy river, with her youngest son floating nearby. She had taken her kids to the Abe Martin Lodge for the weekend, I drove down to spend a day with them.

While the crowded indoor water park was not really “accessible”, I found a way to make it work, and Irena gave me both motivation and support to make it happen. We were not engaged yet, but a year and a half later, her children would become my step-children. Over the years, we’ve grown used to the odd stares and the uncomfortable questions. Sometimes these questions are inappropriate, but I would rather they be asked than allow misperceptions and poorly informed assumptions to exist. People have even asked Irena why she would choose to be with a person with my obviously complex challenges. (That’s putting it mildly).

Dating with a disability means taking risks to engage with the people that matter to you and allowing them to support you in your vulnerability. It means showing your scars, be they physical, emotional, or cognitive and allowing others, even the general public around you, to see the parts of you that you might rather hide. It means participating in the things you want to do but would otherwise tell yourself you can’t do or feel it’s not worth the effort to try because of your disability; but to grow a romantic relationship you have to be present in your beloved’s life even when things aren’t necessarily designed to be “accessible”. Romantic relationships are a vital part of the human experience and people with disabilities are human.

Disability Awareness is not just about understanding that people with disabilities need accessible parking spaces, curb cuts, audible crosswalk signals, wheelchair accessible bathroom stalls, ASL interpreters, sensory rooms, weighted blankets, etc. It’s about recognizing that people with disabilities are a vital part of our society, with a right to enjoy all aspects of life including love and intimacy, and in the year 2023 our society should be designed to include us. It’s about understanding that people with disabilities are also struggling with the same insecurities that you are, just magnified by additional obstacles, restrictions, frustration, and pain. Disability Awareness is about actively creating truly accessible communities that are safe spaces for a diverse people to share their scars and vulnerabilities without fear or obstacle to inclusion in all aspects of life, with equity in their independent choice and activities, which promotes a true sense of belonging in our day to day lives…which ultimately promotes positive emotional and physical health. Disability Awareness is also about working to develop a society in which people with disabilities do not feel like they have to expose their scars and risk additional injury and insult to participate in daily life with their loved ones, by continually improving our communal accessibility and understanding. Ultimately, it’s about seeing people with disabilities not as individuals with unfortunate and inconvenient medical issues to fix or accommodate, but as a people with a shared cultural history that creates the largest continually growing minority in the world and the only minority that crosses all other demographics.

Disability Awareness Month is about recognizing that Disability Inclusion and advocacy for Disability Rights must be an ongoing daily global effort, regardless of what month it is. As we move out of Disability Awareness Month, if you would like to learn more and develop an ongoing Accessible DEIB program for your organization or associations, or if you know of a business or organization who needs this focus, feel free to reach out to me at [email protected].

Photo Description: A smiling bearded man in his 30’s with brownish-red hair and bi-lateral above knee amputations (both legs missing from above the knees and down), shirtless and wearing red swim shorts, floats on his back in a lazy river. He is supported by a beautiful brunette woman who floats behind him. She is smiling as he rests his head on her right shoulder with his face turned to his left toward her. There are several noodle floats in pink, green, blue, and purple colors floating around the happy couple. A young boy with short spikey blonde hair floats nearby watching them as the current carries him further down the river towards other people moving along ahead of him. The lazy river and surrounding indoor water park is crowded with other people all around in the water and on the concrete pool deck engaged in their own activities. A wrought iron fence separates the lazy river from a water basketball court with overhead buckets of water and flowing sprinklers.

February’s meeting began late, as a result of technical difficulties. For some reason it took 20 minutes to get zoom to recognize that I was clicking on the “sign in” button! As a result, we started 15 minutes late with an important question about the stability of paid parental Caregiving as a permanent feature of Attendant Care services through the Aged & Disabled Medicaid Waiver. Please watch the video to learn about some important resources and issues confronting people with disabilities and conditions of aging in central Indiana and beyond!

Here are links for some of the upcoming events mentioned during the meeting:

Healthier Hamilton County’s Financial Wellness as Suicide Prevention Workshop: This will be a Budgeting & Savings Workshop, inclusive of Stress Reduction Techniques. Please share out the info that you can find here and please invite anyone age 30 or under! https://www.hamiltoncountyphhc.org/post/suicide-prevention-from-financial-wellness-budgeting-savings-workshop You can also find the flyer directly here: https://drive.google.com/file/d/1Kiktt4GxOpjNsZNltijOfW9AZRyVlOec/view?usp=sharing

Special Needs Living’s March 14th Event (mentioned in meeting by Jamie McCabe): https://www.eventbrite.com/e/529785973107

Special Needs Living’s Mom’s Weekend Retreat (in May): https://www.eventbrite.com/e/558135587567

EasterSeals Crossroads & DirectEmployers Indianapolis Disability Talent Showcase to connect employers & providers to job seekers with disabilities, held on the 3rd Thursday of each month from 1pm-2pm at Easterseals Crossroads at 4740 Kingsway Drive in Indianapolis, hybrid in-person and via Zoom at: https://iu.zoom.us/j/85031489757

The next virtual meeting of the Disabilities & Conditions of Aging Network for central Indiana and beyond, hosted by Advocates Personal Care will be held on Thursday, March 23rd at 10am. It is an open network for providers and individuals connected to and working in the community of people with disabilities and/or conditions of aging in central Indiana and beyond. If you would like specific time on the March agenda to share about your organization’s efforts, celebrations, or needs, please email Jeremy Warriner at [email protected] before March 21st. The link for the March meeting is below:

Join Zoom Meeting

Meeting ID: 876 9620 8437

Passcode: 088859