Advocating through Ablest Insurance Policy Webinar – Hosted by the World Disability Advocacy Group
I have the distinct pleasure to be part of this incredible global group of disability advocates focusing on disability inclusion issues. We hosted the most amazing, inclusive, and engaging webinar on different perspectives on how health insurance affects individuals with disabilities around the planet.
Check out the YouTube Video:
History in the Making- CMS Expands Coverage of Power Seat Elevation Systems
In 2020, I was eligible for a new power wheelchair. I worked tirelessly to make the medical necessity argument for a power seat elevator. My private insurance carrier denied me. I spent months appealing only to receive the dreaded letter titled “Final Adverse Determination of Benefits.”
My insurance provider essentially told me that I had no more avenues for appeals, and I would have to pay nearly $1,500 out-of-pocket for a seat elevator, which has now greatly improved my independence and quality of life.
I am now able to raise myself up to cook food on the stove safely, brush my teeth at the sink, and safely transfer to my bed, among numerous other benefits. Most importantly, the ability to perform these daily functions independently reduces my risk of secondary complications, such as pressure sores and broken bones due to falls from transferring to and from uneven services.
Life was going to be tremendously more complicated without this addition. I have given myself the middle name, “Pleasantly Persistent.”
After several weeks I received a written letter from my insurance carrier explaining that they now “magically” found that my seat elevator was medically necessary for my diagnoses. Really? They even put a disturbing and common line in the letter stating, “This is not a precedent.” This enraged me!
Why did I have to fight so hard to survive while trying to thrive in life and make a difference in my advocacy work? I developed a laser focus on this issue and started reaching out to people, legislators, and organizations nationwide.
I soon realized this was a national issue and needed attention immediately.
Read the Rest on Christopher & Dana Reeve Foundation:
Https://blog.christopherreeve.org/en/cms-expands-coverage-of-power-seat-elevation-systems
When a Major Commercial Airline Damages your $30,000 Power Wheelchair – What Next?
If you are a power wheelchair user then you are probably cringing at the title of this article as there is a 50% chance if you fly this has happened to you. If you are not a wheelchair user, think about this:
How would you feel if the airline decided to take a baseball bat, however unintentionally, to break your legs after you get off a flight? Well, this metaphor is akin to what many of us wheelchair users feel like when we see our power wheelchairs (our legs) broken into pieces when departing off the plane down to the luggage carousel to pick up our metaphorical legs.
To say you would be irritated is a gross understatement.
Sadly, this happens way too often in the airline industry for a variety of reasons. In my humble opinion, I think it’s cheaper for major commercial airlines to pay for a few power wheelchairs throughout the year than train their staff properly, or rather the third-party contractors who they work with to deal with loading and unloading our wheelchairs. Let’s not even get into TSA and what they do with our chairs.
read more…ACCESSIBLE ZIPLINING IN COSTA RICA – Behind the scenes
I spent my 40th birthday with 5 incredible women in Costa Rica with Wheel the World global travel company and Il Viaggio local Costa Rica accessible travel company. It was bananas. I’m sure many of you have seen many of my posts.
When I decided to embark on an 11 zip line adventure in the middle of the rain forest and Arenal, Costa Rica off a volcano I didn’t really know what to expect. I could only find videos online of people actually ziplining, not behind the scenes of how you actually get a quadriplegic up a mountain and switch from zipline to zipline.
So, in true Ali fashion I have decided to make a series of videos over the coming months of different adventures behind the scene so all wheelchair users can get a better idea of what to expect if planning a trip.
A Profound Transformation – The Power of Moments
Something happened to me in Costa Rica. For the first time in 13 years since breaking my neck in 2010 I took a vacation for my 40th birthday with 6 incredible women who helped make this trip possible. I went on an adventure trip as I had become so accustomed to prior to my accident. I love the rain forest and I love the water. I found a beautiful accessible country with an incredible accessible travel agency to make my dreams come true.
It was an epic 16-day trip with ziplining to 11 different platforms, scuba diving for the first time in 14 years, narrowly escaping the heights of suspension bridges twisting and turning in the wind as I rolled my power wheelchair across, and so many other adventures. I was back. I felt like Ali again.
For the first 7 years after my accident, I pretty much lived in the hospital and traveled internationally for so many surgeries and secondary complications. Then I started figuring out how to navigate living my life with this disability. It took me a little longer than most.
read more…The Other Side of My “AUTHENTIC” Self – Behind the Scenes of being a C6 Quadriplegic
When most people work with me, professionally or in my advocacy life, they usually see a quadriplegic who is well dressed, makeup on, hair straightened, perfectly sitting upright in my wheelchair.
I work very hard and very long hours between my pro bono advocacy life and my professional corporate life. I absolutely love what I do in the world of Diversity, Equity, and Inclusion in the disability space, but it can take a lot out of me. A normal day consists of between 12 to 13 hours of work. You see, I don’t get government benefits due to my income limits and so I have to work full time.
The challenge I run into as a C6 quadriplegic with chronic 24/7 nerve pain burning my entire body, chronic cervical neck pain due to multiple spinal surgeries, and hypersensitivity on my paralyzed hands (“paws” as I call them) is that while my mind is running on 100% most of the time, my body does not always follow suit.
This presents a bit of a challenge. Each day I wake up at 5 AM in the morning, but 9 hours later my body is crying out to me to be kind to it and please help it. Over the years I have finally come up with a routine that works for me. It’s rather unconventional, but it’s my version of disability inclusion in my own life.
read more…What’s More Paralyzing than Being Paralyzed?
It’s a really interesting question. One would think that paralysis alone is enough make life challenging, but, ironically, not walking is the least of my challenges. I’m not quite sure if I’m genetically wired like this, but I always do find the positive side of most situations even in the darkest of circumstances. However, I’m not infallible and I do struggle just like so many with significant disabilities.
I often read incredible stories folks overcoming seemingly insurmountable challenges, but I don’t frequently read about the day-to-day life of what it takes to overcome these obstacles. I’m a realist. I always have been. While I make the most out of, well, quite awful situations at times that does not mean I don’t feel as though I am Sisyphus rolling up the boulder of the mountain only to have it come toppling down on my head.
I’m not sure if I’m a glutton for punishment, but I keep pushing the boulder up the hill with the belief that the universe has an odd way of working out even when you can’t see the trees beyond the forest at times. Keep in mind though, I don’t just wait for things to happen. I am constantly iterating different approaches in my own life each day.
Back to Paralysis…
read more…Corporate Wellness and Preventative Care – Not Optional for Success
Before we can dive into Wellness and Preventative Care programs in the corporate world, we have to take a step back into dissecting Diversity, Equity, and Inclusion (DEI) with respect to the different elements of “DEI.”
It’s quite well-established now that DEI is a foundational component to the success of any business. There is solid evidence and research that has been conducted to make a strong business case for DEI to increase engagement, productivity, and return on investment.
When I think about DEI, the final element, “Inclusion,” really goes beneath the surface of who we are or the structures in which we exist. It’s all about what we do. Inclusion, in a word comes down to behaviors.
One could argue that inclusion truly is the linchpin of DEI. If you have an inclusive organization, you will naturally attract a more diverse workforce and foster more equitable practices. Inclusive behaviors can be defined as the “actions that make others feel valued, respected, seen, and heard.”
Belonging
What really brings DEI full circle with the concept of belonging. I have not reinvented the wheel with these ideas or concepts as there are many books written on this.
Belonging is that feeling that one’s authentic self is valued, respected, seen, and heard. It’s a very crux of inclusion and is consequently being added to many DEI acronyms today in the business world.
read more…A MAJOR VICTORY – CMS proposed to cover SEAT ELEVATION systems in power wheelchairs as a Medicare benefit !!!
February 15, 2023 UPDATE: Public Comments Needed Again to Lock in Decision: www.rise4Access.org by MARCH 17, 2023
CMS released its long-awaited proposed decision to offer Medicare coverage for seat elevation systems in power wheelchairs, for the first time ever. This is a MAJOR VICTORY for the disability community.
Over the last several years it has been such an honor to be part of the ITEM coalition with the most incredible advocates I have ever met. Everyone has worked tirelessly over the years and this is a tremendous step forward, but the work is not yet done. Thank you from the bottom of all of our hearts to all of the wheelchair users, providers, caregivers, advocates, and organizations who submitted comments during the first comment period – your voices clearly made an impact!
Though this proposal is a huge step forward, our work is not yet done. CMS is now accepting more public comments for the next 30 days to weigh in on their decision, and we need your help to make sure the agency finalizes this as soon as possible. We urge all interested parties to once again SHARE YOUR STORY (www.rise4Access.org ) with CMS and let them know they are making the right decision.
If you’ve any questions please don’t hesitate to reach out to me!
