Talk about a loaded question! By the time you’re done reading this article you will likely understand why I choose not to go get manicures or pedicures, spend money on wild vacations, go shopping often, and have tremendous respect for all fellow disabled folks trying to make it from day-to-day.
As if breaking your neck were not insult enough having to deal with being paralyzed from the chest down, having bowel and bladder issues, pressure sores, respiratory infections, caregivers full-time, etc.; the financial burdens associated with any type of disability really can be more debilitating than the disability itself!
When I was first injured I was fortunate enough to have family to be able to help support me in every way possible, even financially. I respect that so many people out there who are injured don’t have much of a support system, have to immediately start navigating the treacherous waters of government support, and have to figure out how to live with paralysis.
When one is newly injured there are pretty much two ways you can go with respect to finances.
The first is if a family does not have the financial resources to support the endless costs of being paralyzed. If this is the case then you have to rely on government support ranging from Social Security Disability to Medicaid/Medicare, and various other government assistance programs.
The challenge with working with the government, as too many paralyzed folks can relate to, is that the government gives you just enough to survive, but not enough to live. 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 think it’s something like $1,100, then your benefits are taken away from you. This completely boggles my mind!
In Europe, 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 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 on this topic because it absolutely enrages me!
The second option for newly injured patients is if they do have the financial resources to support themselves whether that be comfortably or just barely able to get by. Fortunately, I have a family that has been able to help support me and provide what I needed while I was getting back on my feet and working, but not without having to budget everything down to the dollar on a daily basis.
If you don’t have any government support and do not qualify for it life can get very expensive very quickly! I am in this boat myself although I never complain because so many of my friends don’t have the ability to pay for anything on their own, and literally have to fight for a certain number of catheters that their durable medical supplier will provide each month. I’m not kidding.
One of my friends told me that they ran out of catheters during the month and their durable medical supplier would not provide more because they were only allotted a certain amount each month. Basically, government was telling them that they could only pee so many times a day and if they wanted to pee more than they were supposed to they were going to have to pay for it themselves. Absolutely outrageous in my humble opinion!
So, knowing the two choices most people have, pay for yourself or be a slave to the government, life can be financially tricky either way you slice it. When I was first injured I had a mere $2,500 in my checking account and I was told that I did not qualify for government support because I had to have less than $2,000 in my checking account.
With all this in mind, I’m going to break down to some of the yearly costs that are a “necessity” for me to live the healthiest life possible. I do work full time and do not qualify for government benefits, but I also do have a family that helps me, which I am beyond graciously appreciative of in addition to having their moral support.
Before I get started on the cost breakdown of my life, I would be remiss not to touch upon the topic of caregiving. Now, I can only speak to being a quadriplegic paralyzed from the chest down, but if you are dependent on government support you are 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 caregiving to quadriplegics. I don’t think whoever is in charge of understanding the crucial element of caregiving for quadriplegics, which most of us need care 24/7 (not all, but most) got the memo about the reality of our situations.
So, if you do rely on government support and only get a few hours of caregiving each day you have to find friends or family members, whether they want to help you are not, to come and 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 caregiving 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 with caregiving, I have a combination of live-in caregivers and hourly caregivers. While I can find mine privately, and I’ve written countless blogs on this topic, the reliability of finding a great one is like Sisyphus rolling the boulder up the mountain only to have it come tumbling back down on him, and then having them roll it back up again.
I think in the last eight years I’ve been through over 45 caregivers ranging from ones who have tried to injure me, pull out my catheter, leave without notice, drunks, drug addicts, folks with criminal records, etc. For me, of all things most challenging, besides financially, is finding a great caregiver. It’s my source of biggest anxiety, which I will not touch upon too much in this particular article. It’s kind of the situation where you’re damned if you do and damned if you don’t.
The costs I present below DO NOT include:
Disposable income for restaurants, outings, etc.
Regular bills such as internet, cable, water, power
Specialized exercise equipment for working out
Gas + Car maintenance
Unforeseen unbudgeted expenses
Ali’s SCI Yearly Costs
Private Blue Cross Blue Shield monthly deductible
$470/mo – $5,640/yr
Yearly Out-of-pocket Medical costs from Blue Cross and Blue Shield
Suppositories (special ones not paid by insurance)
Supplements for a healthy lifestyle
Caregiving (Live-in + Hourly)
typically between $20,000 – $60,000 for folks)
$30,000 – $40,000
Underpads for shower, bowel program, general care (insurance does not cover incontinence products like these)
Out-of-pocket Urological supplies
TOTAL COSTS just for SCI Life
$49,640 – $59,640