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!

The Rise of Disability Inclusion in the Workplace

Technological, societal, and environmental shifts are reshaping how many companies engage with people, customers, and communities.  This is paving the way for systemic change in how we include underrepresented communities in the employment world.

Over the last several months I’ve been pondering and am now actively pursuing a new professional career in the world of Diversity, Equity, and Inclusion (DEI).  This is not a new emerging field within organizations, but over the last several years it is fast becoming an ever more critical area for organizations, corporations, and stakeholders around the world to focus on.  More specifically, in light of today’s societal changes we need to strive to incorporate a more diverse and equitable culture for women, people of color, members of the LGBTQ community, and the disability community. 

By recognizing the unique challenges faced by leaders with disabilities, organizations can build more comprehensive diversity policies to create an inclusive environment for all employees. Historically, executive level leaders have felt the need to be seen as superhuman in order to survive, a culture that has resulted in displaying one of invincibility and infallibility. This needs to change because once higher level corporate executives realize a disability is not a disadvantage in the corporate culture, the entire corporate structure, from the top down, will make way for real systemic change.

Read the Rest on Push Living Magazine

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 —