[Hotrodgimp]

I wasn't sure if this subject had been discussed before and I apologize if I am repeating this, But as somewhat of a newbie as a result of a deteriorating condition I am shocked at the costs of being disabled. As anyone collecting disability benefits knows there isnt much breathing room in a budget to begin with. And of course we always seem to need that one more drug with its high copay, and thats only for us who are lucky enough to have health insurance to begin with. Otherwise the prescription costs are Rediculous as I recently found out firsthand. One of my doctors suggested trying Thalidomide as a second tier drug but my insurance refused to pay for it because it wasn't yet approved for use for my disorder (neuro sarcoid). My cost out of pocket would have been $3400.00 per month and I would have been on it at least six months! This for something that is only experimental.
As my condition has progressed I have been having more and more trouble walking distances with forearn crutches and AFO's , and recently ordered a scooter. I attended a clinic at a rehab center and picked out a scooter that the vendor said my ins. would cover most of the cost. In the end it is costing me $450.00 out of pocket, but I believe it will make life a little easier.
Driving is becoming more of an issue and so I am having hand controls installed in my car. What the heck, its only another $750.00 out of pocket.
I have been discussing with my brother and some friends that I would love to take my wife back to the carribbean next year but I would never be able to get around the beach with forearm crutches, and severe spasticity in my legs so I have been looking at beach wheelchairs including Colours Tremor model. What the heck, it's only another $3000 or I could go with just the special wheels on another chair for $1100. I guess I better go plant another money tree. Jim

[rkzenrage]

I KNOW it does not cost what they charged me to build my wheelchair. They build and sell cars for less. Most of it is plastic... it is unconscionable. *furious*

This post has been edited by rkzenrage: 14 March 2007 - 06:36 PM

[gsp23]

I know what you mean on the special chair cost. I have only been in a wheelchair now for approx 8 months so I am still trying to pay of medical bills, but I have been trying to get active again too. I live near a ski place (approx 10 min) so thought about getting a mono-ski, but they are close to $2k. I live on a lake so checked into the sit-skis for water and they are close to $2k also. I want to get out in the field behind my dog but those chairs range from $2k-$4k depending on which one actually works out for me. I looked into basketball but those chairs are around $2k, hand cycle same thing. I just dont have the $$$ to get involved in sports right now for the most part. Sled hockey is inexpensive comparitively at only about $500 for a sled and $65 for a pair or sticks (although you do have to buy all your hockey equipment which can add up but I used to play AB hockey so I already had it).

So for me its the Sled hockey and saving up for an all terrain chair as hunting again with my dog is my priority right now. I will jsut make due with racing around on the streats and dirt roads with my existing chair setups, and playing basketball at the park by myself or with friends/family.

[Trail-Boss]

Trail-Boss only gets $1300.00 a month SSDI and then of course medicade. We had to fork out $1300.00 for a reclining comode/shower chair. Apparently its a privelge to shit, shower and shave in the bathroom. This is a bad subject for me, so don't eeeeeeven get me started!!!!
wife, Stick-Tight

[McRobb]

Boy - this hits my hot button as well! After our accident, we said that we have been in the wrong business for a long time!!

My insurance paid over $53,000 in equipment for me after my accident and that did not include remodeling our house so that I could come home or getting a van so that I had a way to come home - very basic and it was only $40,000! Our great car was totaled and the insurance company only gave us $10,000. for our car because of the high milage but we would have driven it another 3 years at least. Then we have remodeled our home over the last two years and done that out of pocket as we have had the money - no clue how much that has cost but I bet my husband can tell you to the penny. At least he and my sons can do our own labor but while you work for yourself, you aren't getting paid by anyone else.

Silly us, trying to make a living by charging a decent wage for all those years - we should have just gotten into remodeling houses for disabled people and charged out the wazoo for it like everyone in the business seems to do.

My wheel chair alone was $21,000 because it was a large, motorized chair with both tilt and recline features and I got the good Roho cushion to help with pressure problems. I guess they have worked as I have not had a lot of trouble with sores but, man, what a price!

Would be interested in knowing what others paid for their wheelchair.

[bensinjury]

We pd 4,000.00 for Bens chair, and luckily we have a friend/neighbor in the home health proffesion, she found us the bathroom supplies that we needed as well as railings on the bed, ect. My husband buildt the ramp himself, and did all the improvements inside the house as well. What gets me is the ins co will not pay for cathetars...we don't reuse, I am so afraid of infections ect...so we purchase a box a month...roughly 130.00...i can't understand why they won't pay...but yet if he gets an infection from useing a used...not completely sterile cath they will pay for an er visit & the meds ect WHAT EVER HAPPENED TO PREVENTITIVE MEASURES...We have pets in the house (2-hound dogs) and i am afraid that even with sterilizing the caths they will still not be clean enough.

[Trail-Boss]

My wheel chair alone was $21,000 because it was a large, motorized chair with both tilt and recline features and I got the good Roho cushion to help with pressure problems. I guess they have worked as I have not had a lot of trouble with sores but, man, what a price!

Would be interested in knowing what others paid for their wheelchair.
[/quote]

Trail-Boss's chair was $30,000.
Now listen, I said, don't get me started!!!!!!!!!!!!!!
love ya all, Stick-Tight

[wheeliebear75]

Oh boy where 2 Bgin? I only get $900 a mo. Uncle Sam is about as generous as Ebeniezer Scrooge (4give spelling)LOL. The only reason I make it from one month to the next is Bcuz of friends & family. I paid for a pair of truly lightwieght crutches....why U ask. Cuz insurance pays for crappy equipment . My new crutches (both L & R) weigh less than 1 of my old crutches. doesn't sound like a big deal, except my shoulders are pooping out on me (my shoulders have carried more wieght over the years than my legs). They won't provide a shower CHAIR only a STOOL. Yeah I'de fallen backwards on a stool 2x B4 I told them where they could stick their stool. They will pay for a "transport chair" great then I'm stuck. Yeah as bad as it hurts I'll bite the bullet and pull money out of my butt for the decent stuff.

Does it piss me off too? Oh yeah U better Bleve it!

[rkzenrage]

I have a used power-chair that was ten grand. Theft. You KNOW it does not cost that much to make a new one.
I have been charged $60 more a night for a room that was smaller than a "standard room", with no view, because it was made for the disabled. Theft/extortion.
Been asked to eat outside at restaurants because they will not make room for me, so I am paying the same money for crappy service and no air conditioning. Theft.
Cannot have my chair with me in aircraft.
Businesses that ignore ADA code.
This list is extensive and I don't want to talk about it anymore.

[bdmpastx]

I know that all of this stuff is very expensive. Trust me. I want to get a standing frame and a hand cycle but they cost alot of money. I am thinking about building my own. I am very mechanical.

On a similar note, after reading a lot of post in which people are talking about money issues, I noticed that a lot of people are on disability in the US. What keeps you from getting a job to get off of disability? Who can live off of an average of $1100/month? I mean believe me, there are a lot of jobs out there. You can make a decent living and be in a wheelchair. I make a pretty damn good living. I am a T4 Complete. Nothing has stopped me from making $133K/ year. I understand that some people just can't do much. Like quads that have limited to no function of the hands. So driving to a job and such would be too difficult but paraplegics shouldn't have a problem getting up and doing something to make money. Hell even those on disability could make some money on the side for cash. Like selling stuff on ebay. You could go around to garage sales, buy some stuff for pennies and sell it on ebay for some cash. every little bit makes a difference. Maybe I am just motivated more than most. I don't know. I know I don't let the little things like missing my legs stop me from doing anything I want to do.

I appologise in advance if I have hurt anyones feelings or upset anyone by saying what was on my mind.

[rkzenrage]

My condition is from illness not injury, it is progressive. I cannot work, if I could I would.
I worked longer than I should have, I was taken out of work in an ambulance.
Even if we have money it is unconscionable to overcharge for these items that we need to live. That is OT and irrelevant.

This post has been edited by rkzenrage: 15 March 2007 - 11:28 PM

[bdmpastx]

rkzenrage, on Mar 15 2007, 10:12 PM, said:

I have been charged $60 more a night for a room that was smaller than a "standard room", with no view, because it was made for the disabled. Theft/extortion.

This is illegal and you should let them know about the ADA since you are in the USA.
You have the right to persue a civil lawsuit for civil rights violation.

rkzenrage, on Mar 15 2007, 10:12 PM, said:

Been asked to eat outside at restaurants because they will not make room for me, so I am paying the same money for crappy service and no air conditioning. Theft.

Once again, this is illegal and you should let them know about the ADA since you are in the USA.
You have the right to persue a civil lawsuit for civil rights violation.

rkzenrage, on Mar 15 2007, 10:12 PM, said:

Cannot have my chair with me in aircraft.

This is due to FFA restrictions. Couldn't take mine on board with me either. I was able to roll into the seat and do a transfer into a standard seat. It really wasn't a problem. They brought me the chair after we landed.

rkzenrage, on Mar 15 2007, 10:12 PM, said:

Businesses that ignore ADA code.

I too am dealing with this. I have become very adpt to the ADA, and the Texas Disability laws. I have won some battles. It takes some persistance.

[McRobb]

bdmpastx, on Mar 15 2007, 04:21 PM, said:

I know that all of this stuff is very expensive. Trust me. I want to get a standing frame and a hand cycle but they cost alot of money. I am thinking about building my own. I am very mechanical.

On a similar note, after reading a lot of post in which people are talking about money issues, I noticed that a lot of people are on disability in the US. What keeps you from getting a job to get off of disability? Who can live off of an average of $1100/month? I mean believe me, there are a lot of jobs out there. You can make a decent living and be in a wheelchair. I make a pretty damn good living. I am a T4 Complete. Nothing has stopped me from making $133K/ year. I understand that some people just can't do much. Like quads that have limited to no function of the hands. So driving to a job and such would be too difficult but paraplegics shouldn't have a problem getting up and doing something to make money. Hell even those on disability could make some money on the side for cash. Like selling stuff on ebay. You could go around to garage sales, buy some stuff for pennies and sell it on ebay for some cash. every little bit makes a difference. Maybe I am just motivated more than most. I don't know. I know I don't let the little things like missing my legs stop me from doing anything I want to do.

I apologise in advance if I have hurt anyones feelings or upset anyone by saying what was on my mind.

It does not offend me that you speak what is on your mind and kudos to you for being able to pursue what must be a very lucretive job. If you don't mind sharing what you do to make that kind of money, I would be interested in knowing what it is that you do and what kind of training and skills are needed as well. Sounds like you can do this from home (?) There might be several of us intersted in being able to do something similiar.

I had a fairly good job with a college before my accident and did try to return to work but wound up with pressure sore problems that made me quit doing that. My college had a good disability policy that has to pay me until I am retirement age but if I can make a certain percent of my salary when I worked, they would cease paying me and I would not be allowed back on that policy once I was off it. As I cannot guarentee how long I would be able to work at any job, I have chosen to hang on to what I have instead of trying to find another position that may or may not work out. Besides, I am 56 so don't have too many years yet to collect on this thing - after that, I will really be hurting for money, assuming that I am still here.

Thanks for sharing with us.

[bdmpastx]

I design control systems for refineries and chemical plants. You really need to be pretty sharp. But there are other jobs that can be done with a PC to make some good money. You can learn how to do programming or you could learn tools like AutoCAD. There is no limit to what you can do with a PC. You could design web pages for small businesses. You could build your own website with a forum and add in some google advertisement links. You would be amazed at how much google pays for internet traffic. The sky is the limit. For most people, their mindset is their limiting factor. You could work for H&R block doing peoples taxes. You could do taxes out of your home for people. Anything that involves a desk and a PC has no limits for a person with an SCI.

[Joed]

bdmpastx, on Mar 15 2007, 10:21 PM, said:

I noticed that a lot of people are on disability in the US. What keeps you from getting a job to get off of disability?

I would say that pain issues prevent some paras from returning to work. Severe chronic pain is like being set on fire, but you're the only one who knows/sees it and so when you're in public you try to pretend it's not happening....that takes a tremendous amount of energy and resources. And, like a siren going off in the room which only you can hear, it's nearly impossible to concentrate on anything.

[bdmpastx]

Joed, on Mar 16 2007, 01:01 PM, said:

I would say that pain issues prevent some paras from returning to work. Severe chronic pain is like being set on fire, but you're the only one who knows/sees it and so when you're in public you try to pretend it's not happening....that takes a tremendous amount of energy and resources. And, like a siren going off in the room which only you can hear, it's nearly impossible to concentrate on anything.

Trust me, I know the pain that you are talking about. I take neurtinin. It helps a little. I had 2 ribs removed on my left side and I have a stabbing pain on that side due to the damage that they did removing them (cutting the nerves). Not to mention the crushing, tingling, tight feeling I get on my lower extremities. I could be naked with nothing touching me but I still get those feelings. I deal with it even though I am in pain. Some days I just want to lay on the couch or bed. But I still manage to get up and go to work. I know it is difficult for some people but then again, I think some people give up too easily. I could go on disability with my company and the state. But I don't want to take a cut in pay and I don't want to sit around doing nothing the rest of my life. I guess it was built into my mindset to never be idle.

[gsp23]

I work full time now also. I know the intense nerve pain also and have learned to redefine pain. If you would have asked me before hand on day that I "thought" I had pain to rate on that scale, what I would have thought was a 9 would now be somewhere in the 2 range. I am on a high dosage of Neurontin also, but find that not only could I not afford disability but I need to keep moving. After I got out of the hospital, I spent a couple more months at home before I got the ok to return to work and thought I was going stir crazy. Sitting around for me anyways made my pain worse because I didnt keep my mind busy, but thats just me. Muscle spasms are the worse factor just because of when you are trying to type or move a mouse for example, its not really cool when you throw your mouse against the wall while working

I make a good living working in software testing and am the manager of the IT support department at my job. I have a degree in computer science and find that you need to have a certain time of mind to work in IT (as you do for any job). If you have a very logical brain and need to know WHY your remote control quit working for your TV and not just that you need to buy a new one then maybe th IT field would be a good fit for you too!

[mrhoopermd]

bensinjury, on Mar 15 2007, 02:51 AM, said:

We pd 4,000.00 for Bens chair, and luckily we have a friend/neighbor in the home health proffesion, she found us the bathroom supplies that we needed as well as railings on the bed, ect. My husband buildt the ramp himself, and did all the improvements inside the house as well. What gets me is the ins co will not pay for cathetars...we don't reuse, I am so afraid of infections ect...so we purchase a box a month...roughly 130.00...i can't understand why they won't pay...but yet if he gets an infection from useing a used...not completely sterile cath they will pay for an er visit & the meds ect WHAT EVER HAPPENED TO PREVENTITIVE MEASURES...We have pets in the house (2-hound dogs) and i am afraid that even with sterilizing the caths they will still not be clean enough.

Check out www.exmed.net for the caths. I don't know which you use but we saved a lot of money by switching to exmed. Shipping is free also. It's worth a look anyway.

[gsp23]

mrhoopermd, on Mar 16 2007, 12:52 PM, said:

Check out www.exmed.net for the caths. I don't know which you use but we saved a lot of money by switching to exmed. Shipping is free also. It's worth a look anyway.

Good site for some of these types of things, I buy my gloves through them. I have some wide offroad tires that are hand and glove killers and I use the hatch para push gloves which have tough padded palms on them, so I go through them every few months. Other gloves I have found I can tear up in a month tops with my "baha" tires so a good glove is necessary

[wheeliebear75]

bdmpastx, on Mar 15 2007, 10:21 PM, said:

I know that all of this stuff is very expensive. Trust me. I want to get a standing frame and a hand cycle but they cost alot of money. I am thinking about building my own. I am very mechanical.

On a similar note, after reading a lot of post in which people are talking about money issues, I noticed that a lot of people are on disability in the US. What keeps you from getting a job to get off of disability? Who can live off of an average of $1100/month? I mean believe me, there are a lot of jobs out there. You can make a decent living and be in a wheelchair. I make a pretty damn good living. I am a T4 Complete. Nothing has stopped me from making $133K/ year. I understand that some people just can't do much. Like quads that have limited to no function of the hands. So driving to a job and such would be too difficult but paraplegics shouldn't have a problem getting up and doing something to make money. Hell even those on disability could make some money on the side for cash. Like selling stuff on ebay. You could go around to garage sales, buy some stuff for pennies and sell it on ebay for some cash. every little bit makes a difference. Maybe I am just motivated more than most. I don't know. I know I don't let the little things like missing my legs stop me from doing anything I want to do.

I appologise in advance if I have hurt anyones feelings or upset anyone by saying what was on my mind.

In my case I was hurt @ 14 & also got a brain injury, and am legally blind. I could work some jobs @ least part time, but then I'm caught in a catch 22. If I work, little to no help and medical bennefits would go down the tube. HUD & IHSS give more when U don't work....sucks huh? So although I do apologize for my share of the burden on the taxpayers....I tried doing college part time to get a degree & earn a salery that would allow me to not worry abo Gov $...that did not work out nearly as well as I thought. My main reason for finding emplyment difficult is in a way "all in my head". So no offense taken here & I hope likewise none was taken on any other ends

[Julian]

I am the boyfriend of a C6 Quad and I know first hand the high costs of being disabled. New wheels for her chair over $500, new axle pins, another $100... new backrest to help her breathe (a basic requirement I think you'll all agree!) $750... the list goes on. Now we have decided to replace her Quickie wheelchair with something that actually will work for her, so thats another $5,000 or so... I agree that it is expensive but what can you do? Without all this gear we cant get around and lead an active life.

[lynne]

My son's chair is a big motorised power chair - I was told it cost 27 thousand euro which is equivalent to about 36,500 us dollars - I did not buy it - it was given to him by our health service. he also has a push chair and this cost over 3 thousand euro plus his roho cushions. By the sound of everything we must have a very good health service compared to others, even though our health service is meant to be in a shambles. No way could I afford these out of my salary. I do not have to pay for any of his medical aids, or medicines thank God.

[Big Valley]

I find ways to cut the cost where I can. I made my own UBE exerciser by cutting off all the unnecessary stuff on a standard exercise bike and putting hand grips were the pedals were.

I use those folding camping chairs for the shower since they are only $5 and actually more comfortable than a "shower chair." And if I take it some place on a trip I just leave it there rather that haul it back home.

I get my chairs with size 25-550 rims so they will accept a standard 26" bicycle tire.

I take a small daily dose of Cipro to prevent UTIs but my doc. kindly prescribes twice the dose I need and 1/2 as many. So I cut the pills in half for a full month's worth.

Then you can be a bit underhanded and cut other non-health related costs. Like sharing the same satellite TV bill with 4 other people. One person has it in their name but gets 4 receivers. You find a cheap or free dish for your house and presto. 1/4 of the bill you all share. Not that I would do that or anything.

Then there is always money in making homemade gay porn.

Do what you can to make ends meet I guess.

[Texaswheelz]

I've been on and off SSI or Disability through the years when not working. But hell, $550 is the most they will give me for full disability. I've had a job about 80% of the time since I was injured, but that 20% is a bitch when it barely pays a car payment and gas for the month. I'm still trying to figure out how they determine how much to pay you in disability monthly and how in the world they expect anyone that is disabled to live on $550 a month. Not to mention it was 11 years after my injury before they finally decided that I was fully disabled and then they made a big deal of it. It is better to have a job and your own insurance, if your stuck on government help then I feel for ya.

I think my chairs have ranged between 3k to 5500. Catheters are the worse, they aren't much more then thicker, longer straws, yet they cost 100's of times more then a straw.

[ParaforGod]

I have a new chair that I fell over in while visiting the cemetery where my husband is buried. It broke off the hand control and burst the batteries. The chair was under warranty but the company whated medicare to pay for it and medicare expected the company to follow through with the warranty. The chair cost 10,000 and just the hand control which is made of cheep plastic and it alone was 4,000. The company that was to fix my chair threaten to have a attorney call the copany who made my chair and they sent what was needed overnight. Its a shame what we have to face all the time but life goes on and life is good.

[essexscipilot]

Thats teribble ParaforGod

I have always said that there are three things in life that you cannot avoid getting ripped off in.

1)Marriage (Weddings)
2)Disability
3)Funerals

One way or another they get you