Re: new power w/c

[Guest guest]

Are you going to a place that handles fitting for severe disabilities? Some

places just handle chairs for " old age " or scooters for MS and they know little

about special fittings. Maybe you don't need special stuff like a sip n puff,

vent tray or extra padding but if you go to a place that handles that they

should be more helpful.

I have had trouble with fittings before not with insurance but because the

fitters rushed the job or were lazy. So, I got an OT/PT to help with the

fittings to tell the fitter I NEED this or that. The OT/PT basically tells what

to do

and oversees the job. This helps because OT/PTs have " education " and

" influence " so it's harder to ignore than my requests. I also bring a friend who

is

protective of me and demands I get what I want. With three -- four people

watching they can't afford to slack off.

I find it hard to believe you cant get a tilt. They are so common now.

Specially if you sit all day. See a rehab doctor and have them write a letter to

the

insurance. Then have an OT/PT write a letter too.

Complain to the management of the wheelchair shop.

[Guest guest]

In a message dated 1/19/04 4:27:49 PM Central Standard Time,

alrt@... writes:

> sometimes even college kids

> seeking engineering projects will jump in to make something work.

>

>

I did that once. They are cute too! ;o)

[Guest guest]

Kendra -

I'm a mom of a 10-year old boy, , with SMA III and he just got

a new chair last year, and already, we just had to have a new back, seat and

wheels put on it, and retrofit it for a tilt. It took 5 weeks, but it's back

now and the tilt feature is great. is pretty mobile (can climb off

the chair himself, crawls around the house, can transfer, but needs help

toileting, getting in and out of bed, etc.) but the tilt feature is an excellent

tool for relieving a sore bum from sitting too long.

We have Cigna PPO and a case manager (if you don't have one, I highly

recommend it!) and she does require letters and such from doctors, therapists

that say these items are " medically necessary " . (And if you have the right

doctors, therapists, etc., THEY know just how to write these letters for you!)

Now, the best thing about having a case manager is that they know you, they

know your history, and if you get a good one, they fight for you! They are

registered nurses that really know their stuff! So, go out and get one if you

don't have one already, and good luck!

Sincerely,

Kim Critelli

Wellington, FL

[Guest guest]

kendra,

have you checked with other w/c vendors? we have 3 who willingly bill and

fight for authos to do custom things. ask if your current vendor even does

custom things. tell him your willing to fight denials. see if mda or fsma

will help pay for the things not covered. sometimes even college kids

seeking engineering projects will jump in to make something work.

good luck,

alana

[Guest guest]

I'd definitely put up a fight. My family never takes no for an answer from

insurance companies. Usually a few letters from us/doctors/therapists that

explain medical necessity are all they need. Sometimes it takes some upset phone

calls. But you should do everything you can to get the perfect chair for you. I

love my Bounder by 21st Century, they're very customized.

~e

[Guest guest]

We fight with the insurance company as well - for everything. This guy

just said the insurance company would never cover such specs that I

asked for. This is the only company I've found in the area that works

with the disabled in getting new chairs, and they work with the

severly disabled. I don't really need too much extra stuff on my

wheelchair, but for comfort needs it's important. I explained to him

the strain put on my muscles, especially in my neck and upper back,

from sitting at a desk for 8 hours/day in work and a few hours at

night in classes and that I need more neck and head support and I KNOW

there are neck and head supports that don't limit your mobility to

lean forward or move your head side to side. He kept insisting the

only ones allowed to be ordered were for sever disabilities that would

basically strap around your head to hold you in a position to the back

of the seat. I asked about tilting options to decrease the strain on

my hips and lower back from sitting 90 degrees 18 hours/day and he

said that isn't possible either.

I wish they did custom fittings. My last place did it, that's why my

chair has a floor-seat height of 23 inches - extremely odd since they

typically only come every few inches. We did this because at the time

I was walking and it was much easier to stand up out of the chair. Now

he's putting it down to 21 inches since that is " standard " for a

" tall " chair. I'm going to hate this, I know. When I'm transferring,

it may sound odd, but I lean my entire chest on my seat and pull my

legs under me. Then I push up from the seat to a standing position.

It's already hard pushing my upper body and head up so much. Now I'm

going to have to do it from an even lower position. He said he'd build

the seat up but I explained that the cushion would have to be VERY

sturdy because even the slightest softness would throw my balance off

once I began putting more weight on one side and the cushion pushed in

further. But if it's TOO hard, it's going to give me the same problem

of sores on my bottom - even worse - that I'm trying to find ways away

from.

He told me to get a PT to work with us, but my pool therapists are not

PTs that this place will work with and the PTs in my pool therapist's

company won't work with me since they don't know me. Besides that, I

don't think anyone knows what I need besides myself. The only thing I

feel comfortable with here is the fact that I'm getting side supports

so I won't be flopping around in the back of the van when being

transported - and even that he argued against until my mother (without

my knowledge but deliberately) ever so slightly pushed me sideways and

I fell completely over and couldn't get back to a sitting position

until someone came and repositioned me because my head is too heavy

for me to lift once it's gone down.

I should ask some of the engineers at RPI. My ex-boyfriend is a

Product Design and Innovation major there and all his friends and frat

brothers are engineers. Hes always making new stuff for me to use

around the frat house (since it isn't very accessible) so I could be

more independent when staying with him. He may have some ideas for

seating and tilting and neck support.

I just don't understand why I can't have a tilt option? You know who

recommended that to me? - My primary care physician!!!! Then my pool

therapists said that would be a great idea, especially if I could tilt

back on my lunch break when I'm done eating for 20 minutes and just

lay back and take the pressure off certain areas. I think I'm going to

talk to him again. I don't care if the insurance " won't pay for it " -

they're going to pay for it. I need it and I want it; there's no

reason I shouldn't have this just because I've done without for the

past 6 years!!

~a little frustrated and angry, Kendra

[Guest guest]

Kendra,

You may also wish to look into getting an OT to write the wheelchair

evaluation. You can look up on the RESNA website www.resna.org to see if

they have a listing of RESNA certified (on the end of the name, ATP )

therapists. I've actually had the wheelchair company give me a great

template for writing up wheelchair needs, and then have the doctor sign the

evaluation. You don't have to go to a therapist the wheelchair company

reccommends, that's usually considered a breach of ethics anyways. You may

also have someone else come out from the company if this guy won't go to bat

for you. I've had one of the local companies get a power chair for an 18

month old, you can only imagine what they must have gone through for that

one. A good company knows how to access other resources if need be. Have

you talked to the local independent living center to see if they know of

anyone else in the area? It sounds like you really need to go somewhere and

get a really good seating eval completed. Where are you at?

Beth T. the OT

Re: new power w/c

We fight with the insurance company as well - for everything. This guy just

said the insurance company would never cover such specs that I asked for.

This is the only company I've found in the area that works with the disabled

in getting new chairs, and they work with the severly disabled. I don't

really need too much extra stuff on my wheelchair, but for comfort needs

it's important. I explained to him the strain put on my muscles, especially

in my neck and upper back, from sitting at a desk for 8 hours/day in work

and a few hours at night in classes and that I need more neck and head

support and I KNOW there are neck and head supports that don't limit your

mobility to lean forward or move your head side to side. He kept insisting

the only ones allowed to be ordered were for sever disabilities that would

basically strap around your head to hold you in a position to the back of

the seat. I asked about tilting options to decrease the strain on my hips

and lower back from sitting 90 degrees 18 hours/day and he said that isn't

possible either.

I wish they did custom fittings. My last place did it, that's why my chair

has a floor-seat height of 23 inches - extremely odd since they typically

only come every few inches. We did this because at the time I was walking

and it was much easier to stand up out of the chair. Now he's putting it

down to 21 inches since that is " standard " for a " tall " chair. I'm going to

hate this, I know. When I'm transferring, it may sound odd, but I lean my

entire chest on my seat and pull my legs under me. Then I push up from the

seat to a standing position.

It's already hard pushing my upper body and head up so much. Now I'm going

to have to do it from an even lower position. He said he'd build the seat up

but I explained that the cushion would have to be VERY sturdy because even

the slightest softness would throw my balance off once I began putting more

weight on one side and the cushion pushed in further. But if it's TOO hard,

it's going to give me the same problem of sores on my bottom - even worse -

that I'm trying to find ways away from.

He told me to get a PT to work with us, but my pool therapists are not PTs

that this place will work with and the PTs in my pool therapist's company

won't work with me since they don't know me. Besides that, I don't think

anyone knows what I need besides myself. The only thing I feel comfortable

with here is the fact that I'm getting side supports so I won't be flopping

around in the back of the van when being transported - and even that he

argued against until my mother (without my knowledge but deliberately) ever

so slightly pushed me sideways and I fell completely over and couldn't get

back to a sitting position until someone came and repositioned me because my

head is too heavy for me to lift once it's gone down.

I should ask some of the engineers at RPI. My ex-boyfriend is a Product

Design and Innovation major there and all his friends and frat brothers are

engineers. Hes always making new stuff for me to use around the frat house

(since it isn't very accessible) so I could be more independent when staying

with him. He may have some ideas for seating and tilting and neck support.

I just don't understand why I can't have a tilt option? You know who

recommended that to me? - My primary care physician!!!! Then my pool

therapists said that would be a great idea, especially if I could tilt back

on my lunch break when I'm done eating for 20 minutes and just lay back and

take the pressure off certain areas. I think I'm going to talk to him again.

I don't care if the insurance " won't pay for it " - they're going to pay for

it. I need it and I want it; there's no reason I shouldn't have this just

because I've done without for the past 6 years!!

~a little frustrated and angry, Kendra

[Guest guest]

Kendra,

He sounds like a jerk! Of course you should get the custom items you need.

A good evaluation by a physical therapy can get anything covered. I truly

believe that's why my chair was approved. I would go with another vendor

for sure. Just the threat of you going to another vendor might make them

try a little harder. Your voc. rehab agency may pay for a thorough w/c eval

by a qualified PT. Don't let that vendor order the chair for you. I bet

they'll just want to rush it through before you have a chance to know what's

going on. I've had chairs which were supposedly " custom " and I ended up

with permanent nerve damage b/c of it. Good luck!!!

Lori

Re: new power w/c

kendra,

have you checked with other w/c vendors? we have 3 who willingly bill and

fight for authos to do custom things. ask if your current vendor even does

custom things. tell him your willing to fight denials. see if mda or fsma

will help pay for the things not covered. sometimes even college kids

seeking engineering projects will jump in to make something work.

good luck,

alana

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[Guest guest]

Kendra -

I see you're getting a lot of good advice, but I just had one more

thing to add.

This rep you're dealing with doesn't sound very experienced -- we had

the same problem. I was extremely frustrated, like you, knowing what I wanted

for my son's chair, but also looking for some expert guidance, too, from

someone who could tell me how to properly fit my son. Our therapist told us of

a

different vendor company (not local, in fact, they are about 1 and 1/2 hours

away) and we switched and began working with them instead. What a difference!

This company travels to the customer! (We are in South Florida, and they

cover the whole state!) They came to my son's therapy appointment, looked over

the chair, together with the P/T, and me, and we all had input about the

changes. Altogether, we came up with what needed to be done. Then they

provided

letters, called our doc, got everything together and I worked with the case

manager to get everything approved. Over $10,000 in changes! So, in the end,

the

original vendor that we bought our chair from has now lost our business

forever! Because this new company has it on the ball! Of course, none of these

mobility companies are perfect, and we've had little problems here and there,

but nothing like what we were dealing with.

So, if I was you, I would find a P/T and a vendor you WANT to work

with, and get a case manager. Put a good team together for yourself. It may

take time, but be well worth it.

Because here's the funniest part about them not wanting to give you a

tilt -- THEY WILL MAKE MONEY ON THE UPGRADE! Why wouldn't they want to make

money on your upgrade? I bet if you talked to the owner and not " just " a sales

rep, maybe that would make a difference? (By the way, this new company

we're dealing with, their reps have therapy-related backgrounds!) They should

fight to find a way to get you everything you need, for gosh sakes! It benefits

them! Don't deal with people who don't know what they're doing -- you're

right, you will be unhappy! And then you'll have to start the process over

again!

I just went through this, so I understand your frustration. Once

again, good luck!

Sincerely,

Kim Critelli

[Guest guest]

I would try a different supplier. There's something definitely wrong there.

Call your insurance company and explain the situation to them and see if they

would recommend another supplier.

Joe

In a message dated 1/19/2004 4:48:53 PM Eastern Standard Time,

kendra@... writes:

hey yall. i just got fitted for a new power chair. im just not

comfortable with what we've discussed. he said i cant have a tilt

option because my insurance wont cover it, no fighting. i asked about

neck/head support options and he said what the insurance will cover

are only two types and they are both physically limiting as fall as

allowing me to move when i want. we cant get my chair any lower unless

we go all the way to 17.5 inches (its already a floor to seat height

of 23 inches but i only want it slightly lower). he just seemed like

he wasnt willing to help with things i need. basically, im getting the

same chair again with an I back for side supports. whats up with that?

all the problems i mentioned he said basically " theres nothing to do

about it " - like my foot rests being too hard to move out by myself

(because they arent on a spring), i requested it and he said they

couldnt do that, or a different seating because its causing skin

irritation and sores, or different arm rests because the material cuts

into my skin, or a different joystick, or a tilt option, etc etc etc.

its like...i cant make anything better than what i have cause either

he doesnt want to fight or the insurance doesnt cover that because it

isnt " necessary. " why get a new chair at all then? i dont get it. what

can i do? i need more than what i have, thats the problem!!!!

~Kendra