Commentary
Insurance may pay for your wheelchair, unless you need it to go someplace
by Haddayr Copley-WoodsThe Senate has finished its deliberations and approved a health care reform bill. Our legislators will be trying to merge the Senate and House bills, and I for one am anxious -- for many reasons, but today specifically as a disabled person.
The people making decisions that will affect our day-to-day lives are people like Missouri's junior Democratic senator, Claire McCaskill -- who said a few months ago that we could save the government "hundreds of billions of dollars" by not "giving free scooters to Medicare beneficiaries who don't really need them."
This displays an all-too-common hostility and suspicion toward disabled people, as well as an appalling ignorance about what Medicare does -- and this from one of our own public officials.
As a matter of fact, qualifying for a wheelchair of any kind in the United States is an enormously difficult process, even for those of us with private insurance. And the process of qualifying says a lot about how our citizens in general view disabled people.
When it first became clear that my neurological symptoms from suspected MS were here to stay, my doctor prescribed a manual wheelchair. I started with a loaner.
"Keep a list of things you can do now with a wheelchair that you couldn't do before," said the vendor. "It will help with insurance."
Slam-dunk, I said. The chair was utterly life-altering.
I worked. Even with bone-crushing fatigue and balance problems on my worst days, I did not have to call in sick.
I parented. I was actually able to take my boys to the zoo and science museum. And I kept up with them!
I volunteered. For the first time since my wildly fluctuating symptoms started, I staffed a table for a local organization I care about, confident that I could be there at the time specified no matter how I was feeling.
The vendor told me that all of these things would be "icing on the cake."
"Icing?" I asked. "I'm a parent. And the sole wage earner for the family."
"Yes," he said sheepishly. "Icing. Can you tell me how you've used it in your house?"
I found out later why he was asking. For my HMO to cover my wheelchair, I had to qualify under rules first set by Medicare. I had to show that I needed the chair for "activities of daily living."
I had to prove I needed it to help me eat, sleep and use the bathroom. That's about all the federal government -- or my insurance company -- thinks I need to do.
Luckily for me -- I guess -- I sometimes do need a wheelchair for these things, so I qualified. However, many people have equally legitimate needs for a wheelchair if they need to travel more than three feet or so. If they can reliably take a few steps inside their own homes, they don't qualify.
Medicare created this policy, and HMOs followed suit. One small part of an enormous and complex code has real and lasting effects on disabled people's lives. It can keep us unemployed and dependent on others when it's not necessary.
Let me lay it out for you. Here is what this policy, and my own government, are saying:
Disabled people shouldn't work. They certainly can't support their families, but if they do, that was bad planning.
Disabled people shouldn't parent -- or at least not in public. Why did a defective person like you have kids in the first place?
It doesn't matter if disabled people volunteer. You'll just look weird and creepy and be in everybody's way.
All a cripple needs is to get from the 'fridge to the toilet to the bed. It's all you deserve, and it's all you're good for.
In fact, I am not a useless drain on society. I am a mom and a wife, and I work hard for my salary. I am a community member. I am a friend; I'm a neighbor. I deserve to roll on these streets as much as you deserve to walk on them.
And, frankly, I am worried. I see insurance and pharmaceutical companies at the negotiating table. I see business interests and a few consumer groups. But I don't see anyone who appears to understand issues like this. I don't see anyone like me.
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Haddayr Copley-Woods, Minneapolis, is a copywriter, blogger and mother.
Comments (22)
Under whose twisted definition do working and raising a family fall outside the realm of "activities of daily living"? Even the definition you linked to includes "work, homemaking, and leisure".
And is McCaskill that bad at math, or just prone to hyperbole/lying? If they are spending hundreds of billions on these "scooters", they'd better be rocket powered.
It's not just wheelchairs....My son with brittle bone disease was denied a new pair of crutches when he outgrew his first set that allowed him mobility for his chronic illness. Yet if he were an athlete who turned an ankle in several games and went to the ER a new pair of crutches would be provided for each "new" injury.
We need to make sure that the needs of the chronically ill and those with rare disease are met in whatever system we provide healthcare.
Brian:
Sorry; the link is unclear. What Medicare uses (and, since they were following this standard, my HMO used) was the most restrictive definition of Activities of Daily living, called "basic," outlined here:
Basic ADLs
The basic activities of daily living consist of these self-care tasks:[4]
* Personal hygiene
* Dressing and undressing
* Eating
* Transferring from bed to chair, and back
* Voluntarily controlling urinary and fecal discharge
* Elimination
* Moving around (as opposed to being bedridden)
http://en.wikipedia.org/wiki/Activities_of_daily_living
I had that EXACT problem with my insurance, Tricare. I hurt my right leg pretty bad. I couldn't walk on it for almost 5 months and any walking beyond 10 ft (around the house) was excruciating. I had rented an electric scooter for doing simple things like shop. But since I didn't use it in the home, I got denied a full time one. I hurt myself 9 months ago. I don't use a scooter anymore but at time I wish I did because it still hurts to walk and my leg still goes weak at times. I don't understand why I wasn't able to even rent a scooter (couldn't use the manual wheelchair because I had severe fatigue too) through Tricare even though I didn't need it long term. I guess that is politics for you.
Wonderful article, with just the right amount of outrage and sarcasm (with the HMOs providing the straight "humor."
How much do wheelchairs cost and how much of the cost is driven by health insurance buying them and reselling them to the customer?
Judy H -
The cost of a wheelchair can vary considerably depending upon the user's needs. If you just need a cheap one for a couple of days where others will be pushing you around, you can get one for $100 or less (Walgreens sells what they call transport chairs for about this - although you can't push your own transport chair.)
Wheelchairs for long term use can range from $500 to $12,000 or more, depending upon needs.
In my own case, after learning that it would take at least six to seven months to get a wheelchair through my private insurance, I ended up buying mine directly over the internet for $750.
But this is not the ideal wheelchair for my needs. For that, I would have needed to pay a couple more thousand dollars - and that's money I don't have. But I didn't have time for the insurance paperwork either, not to mention the hell of finding a durable medical supply company that would work with my insurance.
My doctor would have written me a prescription for a walker, but TriCare and Medicare wouldn't have paid for it because I don't need it at home. I need when I go shopping or out anywhere with my husband and have to walk more than 50 feet.
I ended up going online and buying one for less than $200. It was a really good bargain, it's a heavy-duty one (holds up to 400 lbs) with a seat, and wheels & brakes. It has opened a whole new world for me, but if we hadn't had the spare money for it, I would still be limited to shopping in stores that have electric carts, and not going anywhere else with my husband.
That is not living, but I guess when you're disabled, you aren't supposed to have a life, and if you're fat on top of that, you're really supposed to hide at home and not subject the world to your hideousness (/sarcasm).
I was born with neurological difficulties. In Jan 04, I had a hysterectomy, followed six months later by two brain surgeries. I had to buy my own cane and walker. I worked retail at the time. In the United States, the mindset is that you *must* stand on two feet all day, or you aren't "qualified" to work retail.
My neurosurgeon was totally supportive of me. He wrote my employer a letter informing them that I could still perform the "essential functions" of my job (interacting with customers, scanning groceries, processing payments), but I needed to have a chair or stool to sit on at my cash register. You would have thought I'd asked for a golden throne. It took nearly six weeks of back-and-forth between me, my doctor and my employer, before my employer allowed me to return to work. And then they kept "losing" my chair, and expecting me to work without it.
The Medicare rules seem to be predicated on the notion that it's simply not possible for anyone under 65 to be so disabled they can't work at all, or can't do so without reasonable accomodations. You would think nobody responsible for running Medicare had ever heard of the Americans With Disabilities Act!
Absolutely right and totally infuriating. I am on Medicare and Medicaid, in that situation Medicare rules take precedence even though Medicaid is slightly (very marginally) less restrictive (Medicaid sees going to the doctor as vital, Medicare doesn't).
I had to be bedbound for a year before I received a powerchair that met my needs (tilting and reclining because of stamina and muscle weakness including muscles used for, oh, breathing; feet going up because of circulation issues that make my legs turn purple after a few minutes hanging down; all kinds of side and back supports to keep me from flopping over sideways and hanging off the wheelchair and to keep my hypermobile joints from splaying into terrible positions; headrest with sufficient neck support to reduce spasms; rear wheel drive to avoid the nauseating ocean-like feel of the midwheel-drive the medical supplier wanted to push on me).
During that time I could only sometimes even get to the bathroom in a manual and if I had a medical appointment I was pushed in a crappy manual chair and often flopped over into breathing-restricting positions (yay weakness+hypermobility) and had to be transferred, often by other people, into a folding chair with reclining and a legrest. And even then often reached a point of total collapse, turning blue or grey, and the whole nine yards.
I should not have had to get that bad to get a chair I could use. I used to volunteer, that went down the toilet. I used to do speaking engagements, the couple I tried to do that year resulted in some combination of collapse, changing colors, lying on my side struggling to breathe, and shivering violently in 97-degree weather covered in thick blankets. And even going to the doctor or the toilet often ended quite badly. I live in a one-bedroom apartment and never saw the inside of my living room or kitchen. And only the part about getting around my apartment even mattered to insurance. The rest didn't matter at all, whatsoever.
Generally people need motorized chairs at the point where their stamina or muscles require them to need extra help getting around for long distances. Not at the point where our bodies are falling apart at the joints or muscles and we can't even safely get around our own houses. Under Medicaid's looser (but still too tight) rules, before I had Medicare, I was being pressured to use a powerchair eight years or so before I actually got one. But by Medicare rules I had to be stuck in bed for a year, fighting off multiple attempts to put me in a nursing home. It makes no sense at all and is outright cruel to disabled people to make us wait that long.
My sister-in-law survived 7 years after diagnosis with ALS. She was completely unable to care for herself for the last 3 years, although she could mange her wheelchair independently until about 6 months before she died. Her wheelchair cost $26,000 (stick-shift kind) and none of the cost was covered by their private insurance or medicare. Neither was her total care at home for the last 2 years of her life. My brother had to work or they would have been without any income. Some families feel that is the choice they have to make. How much less expensive is it to pay for a $26,000 dollar wheelchair and a pca, in order to keep family members working? Oh, and when the wheelchair required some fixing (and insurance coverage was finally involved) they would have replaced the wheelchair, but would not have paid just a couple thousand dollars to fix it. Neither my brother or his wife could stomach that use of funds, he got the part and fixed it himself.
Vesta44 is on this site and has been told to stop blogging until she loses weight.
Dave Lavoy, your comment does not make you seem either big or clever.
Thanks for the info. i broke my back in1989. I am a t-6 para and currently use a manual wheelchair. i've had 4 chairs over the last 20 years and have paid for everyone of them on my own.at costs of up to $3000.00. The chair I have now is over 6 years old and I am planning on having medicare provide one for me. now i know what to expect. and the battle i'm about to go through.
We have so many so called "accessibility" laws in place, yet how can someone with a condition lift a 75 lb wheel chair into the trunk of a car. I think that all stores should be required to supply electric wheel chairs and chairs around the store or malls that you can sit down and rest, if you are having a hard time ambulating.
Thanks for your article. It helps to know that I am not alone in dealing with this problem. Even with all the documentation carefully explaining why I continue to need a powerchair my request has been denied twice because I can walk a little. There seems to be no recourse. When my current chair grinds to a hault in the near future I don't know what I'll do, because I don't have the thousands of dollars it will take to get a replacement.
Hi, Im aout 80 miles from the Twin cities in MN. MPLS/ST.Paul. I just about 3 months ago had medicare purchase me a pride mobility go-go-Traveler Elete Plus 3 wheel scooter that fits into my small car and comes apart into 4 pc's.. It has 3 x 9 solid tires on the mobility vehcile that are all one unit and there are no other tires to get traction in ANY minor small amount of ice or PLOWED and schoveld sidewalks to get to my doctor appt's, and to pick up meds at the drug store. Always stuck except inside the bldg. I need a very small chain fix or cable clamp on system for traction outside of the home simply,Please can any help ? Im on medicare and B.C.B.S. of MN.THX!
Great Article. I wish many politicians would think b4 they open their mouths. Its always easy to categorize or lump. Of course theres many things that can b done related 2 mobility issues & equipment, supplies etc. 2reduce cost, but that is true w/ all categories, & there r many. For instance it in our circustances at the time we only needed a standard lightweight or actually a less expensive transport chair- they would not cover a transport chair for a $199 but would cover a much more expensive wheelchair and even a power one. What a shame as we only needed at the time something inexpensive but denied- but if we wanted top of the line including power approved? When someone who really needs a scooter or motorized chair was denied. By the way we opted to pay out of pocket for the cheap one. So yes there probably are $$$ millions of waste for those who could of used other and perhaps better modes of mobility. Especially if it allow someone with more abilities to now not use/strengthen the possible muscles etc. while now losing some strenght and flexibilities in the good ones because now depending soley on the scooter when the could of used a wheelchair better suited or fitted. Most docs I would hope instruct the pros and cons but sometimes , probably more often with elderly just give what they want. So the real problem is the inequity that those who really need these quality of life aids r not getting them, while some that really shouldn't are- & the systm supports it
Haddyr! Sorry ran out of space. While I know your feelings may to come off sarcastic - yes thats all we sometoimes have but through sarcasism there is also just the plain truth. That's what many if perhaps most that are in charge of making decisions for the rest of us are perceived to me also as the output and decisions rendered unfortunately seem to display. But i am sure those around you and the hundred of thousands of those who live and love their challanged spouses, children, parents, close friends and relatives feel fustrated also, as they know many individuals who are still functioning as the main or suppoortive role in their families. And even if not, should not matter one iota, but I can't say anything to the contrary of what you stated and I know you won't let that get you down, as you have those important to you that matter.
I have been going through this with Tricare and Medicare. here its something else i think is interesting. No one cares how you get out of the home because no one will party for a ramp to the outside. What happens to those confined to a wheelchair. I don't know any disabled people who only need to be insidE and not even go to the doctor subscribed the chair. I have lupus and injury to my neck and back which causes extreme spasticity and MS like symptoms, even some ALS like symptoms. I am not diagnosed with those two things but if so, it would still be difficult. The doctors are very confused with me and i become worse each day. I have a loaner chair that does not match my needs, but at least is something. It makes indoor life much better, but still no way to get to the doctor , because no one wants to get me a carrier to take it in my car. On top of that, it does in Colorado, and anything outside, volunteering as i did before i got so bad, getting out of the house for activities to improve depression or watch the activities my children do, or pta conferences are impossible. Since when do ADLs describe a life? They are what a non disabled person thinks a disabled person only needs and insurance believes disabled should be hidden. Why else not allow an elevator on a chair to assist in shipping and getting items of a shelf without assistance. Or try to cook to feed yourself or family without creating a dangerous situation by not being able to see inside the pots and pans.
Why can't Tricare and Medicare understand us-disabled-our each other. Tricare might Pay for a wheelchair, but will not pre approve unless Medicare denies; however Medicare does not do any put approvals or preauthorizations on any custom potter chairs, so catch 22 if you wasn't to only order what you need but within Tricare allowable for your specific situation. See all they will say before is medical necessity, but they say if you need it and they never set eye on you or talk to you. Your doctor knows, the wheelchair guy who evaluated you knows you, but insurance pretends to know what you need through generalizing different disabilities and not allowing different people having different problems with same illnesses. I emailed my congressmen but no one responded. Guess this is because they are disabled too and know what we go through. Yeah right. Good luck to all.
I desperately need a vehicle of some sort that will allow me to get my wheelchair into my car and then be able to get it out again! I'm alone so much of the time. I'd feel so much more human if I could just go shopping, get my hair done or visit with people!
My husband has to work. During the acute period of my illness he took a leave of absence to be with me. Even in the hospital he was by my side feeding me, caring for me and then at Magee Rehab hospital he never missed a day learning my rehab needs, taking part, etc. he is a saint!
He stayed home with me too driving me to out patient at Magee in Philly.
He was finally able to return to work. But now I'm so alone and restricted to my home. He never complains when he has to take me to appts. But I don't want to ask him to miss work for me. I could drive if there was just some way I could put my wheelchair into a car and then back out again at the store, etc. I just cannot afford a special car or one of the Robots I've seen.
What can I do? Is there any kind of some assistance for buying/leasing for that?
I really enjoy all your comments and messages.
Patti
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