How Expensive is it to be a Quadriplegic? A Grim Reality

Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life.  However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis.  The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!

For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic.  In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc.  While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular. 

I am a complete C6 quadriplegic meaning that I am paralyzed from the breasts down, I have some upper arm function, but zero hand function.  Due to an overwhelming number of secondary complications I have had to endure over the last 11 years I need 24/7 care.  This does not mean I need someone to sit by my side every minute of every day, but I need someone in the household in case something goes wrong, which can happen at any moment in my particular case.  This, alone, can get very expensive if you are paying someone to help you!

After a traumatic life altering event leaving a person a quadriplegic there are generally 2 financial routes you can take when you are newly injured.  The first is government support and the second is paying for everything out-of-pocket because you do not qualify for government assistance.  While many people I know live on government support I am not in this category.  I will briefly dive into the ins and outs of government support.

Government Assistance

If you become a quadriplegic and you or your family do not have the financial resources to pay for all the costs associated with care, van adaptations, health insurance, housing modifications, etc. then you will likely qualify for several government assistance programs including, but not limited to:

  • Social Security Income (SSI)
  • Social Security Disability Income (SSDI)
  • Medicare or Medicaid (or a combo of both) Health insurance
  • Food stamps
  • Affordable Housing

I’m just naming a few, but there are many government programs out there to assist.  To dive into all of these assistance programs involves a completely separate article, but the challenge with working with the government, as too many paralyzed folks can relate to, is that the government just gives you enough to survive, but not enough to really thrive.  To add insult to injury we have a system here in the United States, unlike in Europe, which does not promote SCI patients to acclimate back into the world, and start working.  If you make over certain amount of money per month, I believe it’s something around $1,100 or so, then your benefits are taken away from you.  Yes, seriously!

In Germany, for example, there are vocational rehab centers specifically for SCI folks to learn a specific skill to get back into the workforce and live a fulfilled life.  In the United States, this is so far from the reality of what it should be.  The US government is basically telling you that “we” will provide the bare necessities for you to get by, but if you try and make something of yourself “we” will cut you off financially, and make you fend for yourself even if you don’t make enough money on a yearly basis to pay for everything you need.  I could probably go on and on with this topic because it absolutely enrages me!

I can’t tell you how many countless stories I’ve heard about friends who are trying to use their catheters longer than indicated because Medicare tells them how many times a month they are allowed to pee.  Another challenge I see all the time is many quadriplegics would like to get back to work, but with a salary of $40,000-$50,000/yr they get kicked off of their government benefits because they are making too much money, but not nearly enough to pay for a life with paralysis and care giving.  It’s an entirely “Lose Lose” situation.

Paying out of Pocket (You are on Your Own)

This is the second type of category you may fall into as a quadriplegic if you do not qualify for government benefits.  I do not.  I will preface this by stating I was incredibly fortunate when I was first injured to have a family to help get me back on my feet.  My family is still always there for me, which I appreciate is a highly unusual situation. 

When I was first injured I remember having $500 over the maximum amount of money you could have in a bank account to qualify for SSDI, and that was only a few thousand dollars, so I was rejected if you can believe that.  In any event, I am extremely fortunate to have a family that helped me get back on my feet.

I now work full time, do not qualify for any government support, and if you look at my salary you might think to yourself “what on earth does she have to worry about?”  In some respects I agree with you.  However, if you take a closer look, every single dollar I make goes right out the door at the end of the year to paying for caregivers out-of-pocket, health insurance, food, life, etc.

Unless you’re a multimillionaire being a quadriplegic will financially drain you no matter what you do whether you are on government support or you’re trying to pay for yourself.  Unfortunately those are pretty much the facts on the ground as they stand!  Honestly, if I was a paraplegic and only paralyzed from the waist down meaning that I would likely be able to live by myself and not need to pay for care giving, my life would look drastically different.  However, this is not the case and I live in a world where a realistic perspective on life takes precedent over some of the dreams I may have.

So, knowing the two choices that most people have, pay for yourself or be a slave to the government, life can be financially tricky either way you slice it.  With all this in mind, I’m going to break down some of the yearly costs that are a “necessity” for me to live the healthiest life possible.

Before I get started on the cost breakdown of my life, I would be remiss not to touch upon the topic of care giving further.  Now, I can only speak to being a quadriplegic paralyzed from the chest down, but if you are dependent on government support you are usually forced to work with subpar healthcare agencies with caregivers that are constantly revolving in and out, mostly don’t care about your well-being, and are only in it for the paycheck.  Again, there are exceptions to the rule.  To top it off, unless you are paralyzed from the neck down most government support only offers a few hours a day of care giving to quadriplegics.  I don’t think the higher-ups in many of these government agencies who tell you how many care giving hours you are allowed as a quadriplegic received the memo about the realities of our life quite frankly.

So, if you do rely on government support and only get a few hours of care giving each day you have to find friends or family members, whether they want to help you are not, to pitch in so you literally don’t die!  If you do not rely on government support, you have to pay an obscene amount of money out-of-pocket each year whether you have live-in caregivers or hourly caregivers.  This does not leave much wiggle room for disposable income to go out and enjoy life.  Many folks who don’t qualify for government support, but do not quite make enough money to have reliable care giving on a regular basis, are often times left in fear for their lives trying to scramble to figure out who is going to help take care of them.

As for me, I have a combination of live in caregivers and hourly caregivers.  This is actually the biggest source of mental and financial anxiety in my life.  If I do not have reliable people to take care of me then the rest of my day comes to a crashing halt.

Okay here we go …

Financial Breakdown

There are certain expenses I will not include as we all have to pay for items such as food, rent, clothing, etc.  I just want to give you a glaring view of the additional costs of just being paralyzed for my life.

The costs I present below DO NOT Include:

  1. Food
  2. Mortgage Payment
  3. Disposable income for restaurants, outings, etc.
  4. Travel
  5. Clothing
  6. Utility bills, internet, cable, water, cell phone
  7. Gas, car maintenance

Additional Financial Costs associated with Life as a Quadriplegic:

 Ali’s SCI Yearly Costs
Private Blue Cross Blue Shield Yearly deductible (Healthcare Marketplace)$5,400
Yearly Out-of-pocket Medical costs from Blue Cross and Blue Shield$8,500
Suppositories (special ones not paid by insurance)$2,400
Supplements for a healthy SCI lifestyle$2,500
Caregiving (Live-in/hourly)  
* Spoke with dozens of quad’s who also pay out-of-pocket – General Consensus agreement
$50,000 – $60,000
Underpads for shower, bowel program, general care (insurance does not cover incontinence products like these)$2,000
Out-of-pocket Urological supplies$1,500
TOTAL COSTS just for SCI Life$72,300 – $82,300

* (Let’s not forget the approximately $30,000 modification to make a van accessible, which I did not include above)

* (This also does not include the thousands of dollars I have paid out for adaptive exercise equipment to stay healthy, which insurance would not pay for.)

If you need to sit down after reading this breakdown of costs I don’t blame you.  It’s psychologically painful for me to disclose this information publicly as well, but I think it’s important for people to understand just how expensive it is to be paralyzed.  There are months when I actually don’t spend as much as I indicated above because I have a hospital bill or another bill that comes in that needs my attention, so I sacrifice certain things to pay certain bills.

I call this “Adulting!”  You may ask why I am sharing so much of this information with you and the overarching goal I have is to shed light on the fact that – DISABILITY DOESN’T DISCRIMINATE.  Anyone of you can join this unfortunate club for any reason and one would hope that stakeholders in our society, and I’m speaking to the governmental system here, would be more accommodating in understanding the real costs associated with living life as a quadriplegic.

I truly believe there need to be allowances for government support if you are a quadriplegic, such as increasing the amount of money you can make per month while still maintaining certain government benefits, at least health insurance anyway.  I am a far cry from even being remotely eligible for Medicaid, which could pay for care giving as opposed to Medicare.  There is a program called Medicaid Buy-in, which I could apply for, but because I married I’m penalized, and I’m not eligible.

While many people save up to go on vacation or purchase a cool new car or go out on a shopping spree, I simply cannot do this.  That’s okay.  I’m not complaining, but these are the reasons I don’t do things such as getting my nails done regularly, traveling the world as much as I would like to, etc.  I have responsibilities and I have to put my priorities first in order to live my best life possible to make the greatest impact.

I choose to devote my life to helping others, paying it forward, human kindness, and in order to do this I have to work my butt off to make it happen.  There are days when the chronic burning pins and needles nerve pain takes over my entire body and I just want to shut down, but I cannot.  I have to pay the bills and make my life work for me.  These are the sacrifices I make as so many of us significant disabilities make as well.

Life is a Choice –

There are certain allowances I could make to make my life cheaper such as using inexpensive suppositories I use to help me go to the bathroom, but I choose the more expensive ones because they don’t create long-term complications of burning the inside of my rectal lining.  I know, probably too much information, but it’s my reality.  I’ve been dealt the unfortunate hand of tremendous medical secondary complications, which is okay and I figure out how to work around it, but I do pay a financial price for it.

In conclusion, I don’t want you to feel sorry for me or any of us in this situation, but perhaps this article opens up your eyes just a little bit as to the grim financial reality many of us are faced with living a life with a significant disability. 

There is no great solution as of yet, but we need to have these open and honest conversations in order to affect systemic change in our governmental health system or in companies perhaps offering to pay for care giving services for employees with significant disabilities who have a tremendous amount of value to add to a company.  Food for thought for your day!

Spectrum Local TV News Story – Disability Advocate Draws Attention to Lack of Inclusive Policies

I’m super excited & honored to have been featured in a news story by Spectrum News on disability inclusion in light of recent events with the paralympian who was unable to bring her caregiver, her mother, to Tokyo.

As I always say, Disability Doesn’t Discriminate — anyone can join the club for any reason and creating a globally inclusive environment whether that be in the paralympics, employment world, your community, the government, etc. should be at the forefront of everyone’s mind!

https://spectrumlocalnews.com/nc/triangle-sandhills/news/2021/08/24/disability-advocate-draws-attention-to-lack-of-inclusive-policies

Flowing East and West: The Perfectly Imperfect Journey to a Fulfilled Life all Podcast

I’m super honored to have been a guest on this incredible Podcast with two amazing ladies!

https://podcasts.apple.com/us/podcast/flowing-east-and-west-the-perfectly-imperfect-journey/id1546631522

Here’s the intro of what the podcast is all about – FEET FIRST:

“Ali Ingersoll had a somewhat charmed upbringing, attending boarding school abroad, going on amazing adventures and taking advantage of every opportunity that showed up.  Then a life-changing accident happened when Ali took a head-first dive into shallow water.  Feet First not only describes Ali’s plea for anyone jumping into shallow water, but also how she has lived her life, both before and after the accident.  While she is now restricted to a wheelchair, Ali continues to live life to the fullest  – wait until you hear her dating stories (sorry, guys, she is now happily married!) – we were both laughing hysterically.  This in no way means Ali hasn’t had ups and downs – indeed, she speaks very candidly about her challenges and dark days. However, in her toughest moments, she has developed an incredible resilience and a “radical acceptance” that we cannot help being inspired by.

Ali reminded us of this quote which we think perfectly sums up how she lives her life:

Disasters lead to the best stories – Ali Ingersoll

Ali Ingersoll is a day trader, consultant, disability advocate, writer, blogger, editor, and public speaker. She started her advocacy mission after being repeatedly denied medically necessary equipment by insurance companies over the last 10 years since becoming a C6 quadriplegic and full-time wheelchair user after a shallow water diving accident.”

Ali’s passion lies in coaching people with disabilities on how to improve their quality of life by teaching them to self-advocate in order to live a life of independence, dignity, and grace.

Ali has a firm philosophy of paying it forward by giving back to the community through outreach, working together, and building each other up. She believes it’s important to band together as one in order to affect the greatest change on the national stage and in local communities.”

6 Strategies to Navigate Your Insurance Provider’s Approvals Process

As a C6 quadriplegic, I’ve spent the last decade perfecting strategies to improve my odds of success in getting the durable medical equipment, prosthetics, orthotics and supplies I need from my health insurance provider. A few key pieces of equipment I have successfully obtained include a specialized shower chair, pressure-relieving mattress, hospital bed, FES bike, and seat elevator for my power wheelchair.

I’m not the only wheelchair user who’s figured out effective strategies for every step of the process, from prior authorization to putting together effective appeals if denied. I interviewed others who use wheelchairs, including two staff members of the United Spinal Resource Center team, to present you with the best strategies for obtaining the medically necessary DMEPOS you need to not only survive but thrive in life.

I interviewed five other advocates around the country to get their take on shared strategies we are all employing to get the medically necessary equipment need to live our best lives.

Read the rest on United Spinal’s New Mobility Magazine

Turning Pain into Purpose

I am often asked where I get my strength & determination to keep going when it’s one thing after another?

In short, I have mentally conditioned myself over 11 years to turn my daily pain struggles into purpose with the sole ambition of helping others realize that life is not over even when the seemingly darkest moment is upon you.  I derive my strength from others positivity, family support, I’m sure a little bit of genetic grit somewhere thrown in there, and the constant urge to push through what feels like insurmountable challenges at times.

Quite frankly, it’s exhausting. It takes up nearly 1/3 of my day to just power through, but I do it. As I write this article I woke up sick as a dog and spent nearly an hour staring at the screen. I don’t have the luxury of lying in bed all day to get better because I would get pressure sores from staying in bed too long. So, I was forced to get up in my chair. Sure, I could have laid back all day and done absolutely nothing, but what I find gets me through moments where I just want to crawl on the couch and wait for tomorrow to come, is the fact that I know I may be helping others appreciate the fact that they are not alone. I do appreciate when I need to take a moment and scale back my day, but sheer determination keeps me going to make a difference in the world.

I don’t want to wake up at the end of my life and realize that I have just worked my ass off, but I want to make an impact in people’s lives in some way, shape or form. My husband and I are not going to have children, so I feel this incessant drive to keep going. I am fortunate because I have the innate ability to move from project to project without losing focus. I retain information quite well, learn quickly, and “just do it” as Nike would say. Please don’t misunderstand, this is a daily battle I take on in every moment because chronic pain can bring an ordinary person to their knees, and disrupt their entire lives. I appreciate we all handle pain differently.

Read the rest on Push Living Magazine:

How Do We Overcome the Dark Clouds Overhead?

I’ve written numerous articles on the importance of mental health and expressing the fact that “It’s okay, to not be okay.”  I believe this wholeheartedly, but often times when I find myself writing articles and reflecting back on a challenging moment or week that I had had – I do it while I am in a better mental state analyzing my past feelings.  Today I’m flipping this article on its head because as I write this I am definitely not okay in the feelings I have about my mental well-being at present, which feel wildly different than feelings expressed in hindsight.  I think both perspectives are valuable and I offer you today a glimpse into what’s really going on in life and how I am attempting to handle it.

I find great comfort in knowing that I am not alone in my feelings because I get dozens of messages a day from folks expressing thanks for being extremely open with what I go through as a C6 quadriplegic who is dependent on other human beings to take care of me on a daily basis.

What prompted me to write this article was Naomi Osaka.  I’m not sure if you’re familiar with this young lady, but she is a professional Japanese tennis player and has been ranked number one in the Women’s Tennis Association.  She is dealing with a lot of the mental stresses that undoubtedly come along with being a top professional athlete in her field.  Just the other day she did not want to partake in a press conference for her own mental well-being and was penalized with a $15,000 fine for not talking to the media after a match.  There was an enormous amount of support around the globe acknowledging the importance of mental health from the public, sponsors, and corporations due to the fact that she was honest with yourself, and the world.

I’ve spent the better part of a decade learning to adapt, train, push forward, and fight for survival on a daily basis to, not only accept this life of spinal cord injury, but to thrive in it. For the most part, I believe I’ve done pretty well and professionally I seem to have the ability to seamlessly keep striving for greatness even when I am faced with strikingly devastating defeats.

In my personal life, especially the last few weeks, it feels as though life has been crumbling around me.  It doesn’t matter if you have a disability as I am sure many of us feel this way, like failures, whether you’re a single parent trying to handle multiple children on your own, a high-powered CEO trying to meet quarterly profits, or a starving artist trying to make ends meet – we all have the ability to crumble as human beings.  Now, it’s how we get back up that of course defines us.

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The Never Ending Health Insurance Battle – A Year Later!

If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice.  The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.

As the years roll by and you grow up that distant memory of the large envelope stays with you.  It certainly stayed with me.  Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment.  I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.

Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.

he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed.  Blue Cross and Blue Shield had initially rejected both requests.  The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit.  I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.

Let me tell you my story … on PushLiving Magazine: https://pushliving.com/the-never-ending-health-insurance-battle-a-year-later/

ICU Survival Guide with a Twist!

There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different.  With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.

However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well.  Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.

Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time.  What pray tell did I do you may ask?

Why an ICU sexy photo shoot of course!

Check it out on Push Living Magazine:

Never, Never, Never Give up – Even When Health Insurance Denies You

It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world.  I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.

I would be a hypocrite if I didn’t attempt to put actions to my words.  So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled. 

My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.

The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled.  With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information. 

I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with.  It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished.  Unfortunately, many people just take their insurance policy at its word and don’t test the system. 

Change does not come from blind compliance!

We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.

Read the rest on: Push Living Magazine — https://pushliving.com/never-never-never-give-up-even-when-health-insurance-denies-you/

“WHAT I NEVER THOUGHT I WOULD SAY OUT LOUD”

1

The other day I was working with my caregiver and I caught myself thinking about some of the things I ask for on a daily basis, and just how unbelievably bizarre they must sound the average able-bodied person. 

I started to make a list of these particularly humorous statements that most people would consider very peculiar indeed!  I found myself laughing out loud because I thought back to my life a decade ago and how I never would have thought I would catch myself asking people to do these particular tasks for me.  To end the year on a funny note amidst a year of complete chaos I hope to leave you with a chuckle by the end of this article.

Bowel Care

I’ve written about this topic numerous times, but when you are paralyzed you need help going to the bathroom.  Plain and simple.  When you (an able-bodied person) go to the bathroom you simply sit down on the toilet and poop.  I, along with most other spinal cord injury folks, especially quadriplegics, do not have this luxury.

I do not have the ability to use my abdominal muscles to push out the poop.  Probably too much information, I know, but that’s life.  In any event, I have to put a suppository in my bum, let the poop come out, and then I have to have my caregiver put gloves on to go into my behind to get the rest of the poop out.  Yes, it’s a pretty involved process, not particularly pleasant, but, hey, it is better than the alternative of going to the hospital because you can’t poop.

So, every morning during my “Morning Program” I ask some of the following questions:

1.) “How much poop did you get out of my bum?”

2.) “Okay, can you put your finger in my bum now to get the rest of the poop out?”

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