Just as she was moving forward......

[Guest guest]

Dear Crystal,

Grrrr's all over the list....whew. Let's see if we can break yours down

into solutions.

This is what worked for me-we went through Childrens Hosp. for everything.

And everything skated through.

If a doctor writes an order for the walker and specifies that

it is a medical necessity, that should carry enough weight to have it

covered. Then he can put the order through at the hospital " adaptive

equipment "

office.

If there isn't one. He/she could submit order to outside equipment company

(there are many)

and the company can bill the insurance co. directly. Or if he's feeling

generous, he could

include the equipment on his bill to the insurance company and the equipment

supplier

could bill him. (That might work better with a local doctor.)

---

Another option is to link up with another therapist. (I'm sure you'd prefer

not to, but you

need that equipment.)

---

Even though the ins. co. may have balked at a PT service, they look at

things differently

when there are signed doctors orders stating medical necessity.

---

Pretty much the same thing happens regarding feeding. You may have to go to

the

clinic, rather than have in-home services, but you don't have to lose the

service entirely.

---

You may have gotten a non-supervisor who refused to cover services.

sometimes supervisors

are more knowledgable regarding requirements for someone as involved as a

Charger.

---

Last case scenario is to mention legal avenues-as pointed out-you'd

think they'd

appreciate that the child should be allowed to learn to walk and eat.

--

Do not dispair-this isn't a done deal by any means.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Just as Eva was starting to walk the therapists who loaned us her gait

trainer is taking it back. She was just starting to learn to move with

it and now on friday they are coming to take it away.

ALSO we lost our feeding therapist because our insurance doesnt want

to pay for it. And because of whatever reason the insurance will not

pay is not a good enough reason for EI to take over the payments.

SO here we were taking steps ahead and now they are being taken away.

I am so crushed and so disappointed I just want to cry.

We raised about $6,000 at the benefit but that is going to pay her

medical bills and the money from our house closeing is going to a van

so we can take her wheelchair places.

Her PT said she was going to order her a gait trainer but the last

order took 7 months and she can't do it til the next meeting in Sept.

I am so mad I want to scream!!!

Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

to Dan in Illinois

[Guest guest]

Oh Crystal-

I am soooooooooooo sorry!

{{{{{hugs}}}}}

I know you will make all good of this - you always have - that is part of your

gift - you find blessing in it all.

love,

yuka

Just as she was moving forward......

Just as Eva was starting to walk the therapists who loaned us her gait

trainer is taking it back. She was just starting to learn to move with

it and now on friday they are coming to take it away.

ALSO we lost our feeding therapist because our insurance doesn't want

to pay for it. And because of whatever reason the insurance will not

pay is not a good enough reason for EI to take over the payments.

SO here we were taking steps ahead and now they are being taken away.

I am so crushed and so disappointed I just want to cry.

We raised about $6,000 at the benefit but that is going to pay her

medical bills and the money from our house closing is going to a van

so we can take her wheelchair places.

Her PT said she was going to order her a gait trainer but the last

order took 7 months and she can't do it til the next meeting in Sept.

I am so mad I want to scream!!!

Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

to Dan in Illinois

[Guest guest]

Crystal, sorry to hear about this bad news - I wish I had a magic wand to

wave it all back to you. I can't believe they won't fund feeding therapy or

a gait trainer. You would think they'd want her to learn to walk and eat.

Geesh...

>

> Just as Eva was starting to walk the therapists who loaned us her gait

> trainer is taking it back. She was just starting to learn to move with

> it and now on friday they are coming to take it away.

> ALSO we lost our feeding therapist because our insurance doesnt want

> to pay for it. And because of whatever reason the insurance will not

> pay is not a good enough reason for EI to take over the payments.

> SO here we were taking steps ahead and now they are being taken away.

> I am so crushed and so disappointed I just want to cry.

> We raised about $6,000 at the benefit but that is going to pay her

> medical bills and the money from our house closeing is going to a van

> so we can take her wheelchair places.

> Her PT said she was going to order her a gait trainer but the last

> order took 7 months and she can't do it til the next meeting in Sept.

> I am so mad I want to scream!!!

> Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

> to Dan in Illinois

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

.... I also wonder if you can get another one from the Easter Seals or the

Cerebral Palsy foundation???

This stinks, Crystal. I am sure people here will have great resources and ideas.

pam

Re: Just as she was moving forward......

Dear Crystal,

Grrrr's all over the list....whew. Let's see if we can break yours down

into solutions.

This is what worked for me-we went through Childrens Hosp. for everything.

And everything skated through.

If a doctor writes an order for the walker and specifies that

it is a medical necessity, that should carry enough weight to have it

covered. Then he can put the order through at the hospital " adaptive

equipment "

office.

If there isn't one. He/she could submit order to outside equipment company

(there are many)

and the company can bill the insurance co. directly. Or if he's feeling

generous, he could

include the equipment on his bill to the insurance company and the equipment

supplier

could bill him. (That might work better with a local doctor.)

---

Another option is to link up with another therapist. (I'm sure you'd prefer

not to, but you

need that equipment.)

---

Even though the ins. co. may have balked at a PT service, they look at

things differently

when there are signed doctors orders stating medical necessity.

---

Pretty much the same thing happens regarding feeding. You may have to go to

the

clinic, rather than have in-home services, but you don't have to lose the

service entirely.

---

You may have gotten a non-supervisor who refused to cover services.

sometimes supervisors

are more knowledgable regarding requirements for someone as involved as a

Charger.

---

Last case scenario is to mention legal avenues-as pointed out-you'd

think they'd

appreciate that the child should be allowed to learn to walk and eat.

--

Do not dispair-this isn't a done deal by any means.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hey Crystal, Eva and Family!!

PUSH this issue!!!! Find out why EI won't pay for the feeding

therapist-I thought they are supposed to! I thought they are

supposed to bill your insurance, get the denial then bill the state.

I know this is frustrating and I don't blame you for not feeling

like a battle-like you don't already have enough, right? You can

also request a 6-month meeting with EI and maybe then the gait

trainer can be added to the IFSP.

I feel for you on this one. You'll get it straightened out, don't

worry!!!

Janay

>

> Just as Eva was starting to walk the therapists who loaned us her

gait

> trainer is taking it back. She was just starting to learn to move

with

> it and now on friday they are coming to take it away.

> ALSO we lost our feeding therapist because our insurance doesnt

want

> to pay for it. And because of whatever reason the insurance will

not

> pay is not a good enough reason for EI to take over the payments.

> SO here we were taking steps ahead and now they are being taken

away.

> I am so crushed and so disappointed I just want to cry.

> We raised about $6,000 at the benefit but that is going to pay her

> medical bills and the money from our house closeing is going to a

van

> so we can take her wheelchair places.

> Her PT said she was going to order her a gait trainer but the last

> order took 7 months and she can't do it til the next meeting in

Sept.

> I am so mad I want to scream!!!

> Crystal mom to (11), (4), and Eva (2 year old CHARGEr)

wife

> to Dan in Illinois

>

[Guest guest]

I am digging for Infinitech's phone number now. UCP does it-

basically durable medical equipment " exchange " . You don't have to

bring anything, and they'l give it to you if they've got it. THat's

how I got Rasha a KidCart. The one I know of is out here by me in

Tinley Park-a bit of a haul for you but that can be worked out. As

soon as I find the number, I'll give it to you. Can you call me

again? I didn't write your number down before it disappeared from

the ID... :-(

As said, a hospital that has coordinators might help. On the

south side it's La Rabida. I haven't tried it myself, still muddling

through, but the services there seem pretty good. Children's

Memorial might be another option. For Rasha, we did just get a rx

from her ped for the gait trainer and they're going to bill the

insurance-EI isn't going to pick up the tab on this one.

Another phone call that might be worthwhile is the Illinois

Assistive Tech Program in Springfield. They loan stuff too. Their

number is 800/852-5110. Website www.iltech.org

Talk to you soon.

Janay

>

> ... I also wonder if you can get another one from the Easter Seals

or the Cerebral Palsy foundation???

> This stinks, Crystal. I am sure people here will have great

resources and ideas.

> pam

>

>

> Re: Just as she was moving forward......

>

> Dear Crystal,

>

> Grrrr's all over the list....whew. Let's see if we can break

yours down

> into solutions.

> This is what worked for me-we went through Childrens Hosp. for

everything.

> And everything skated through.

> If a doctor writes an order for the walker and specifies that

> it is a medical necessity, that should carry enough weight to have

it

> covered. Then he can put the order through at the

hospital " adaptive

> equipment "

> office.

> If there isn't one. He/she could submit order to outside

equipment company

> (there are many)

> and the company can bill the insurance co. directly. Or if he's

feeling

> generous, he could

> include the equipment on his bill to the insurance company and

the equipment

> supplier

> could bill him. (That might work better with a local doctor.)

> ---

> Another option is to link up with another therapist. (I'm sure

you'd prefer

> not to, but you

> need that equipment.)

> ---

> Even though the ins. co. may have balked at a PT service, they

look at

> things differently

> when there are signed doctors orders stating medical necessity.

> ---

> Pretty much the same thing happens regarding feeding. You may

have to go to

> the

> clinic, rather than have in-home services, but you don't have to

lose the

> service entirely.

> ---

> You may have gotten a non-supervisor who refused to cover

services.

> sometimes supervisors

> are more knowledgable regarding requirements for someone as

involved as a

> Charger.

> ---

> Last case scenario is to mention legal avenues-as pointed out-

you'd

> think they'd

> appreciate that the child should be allowed to learn to walk and

eat.

> --

> Do not dispair-this isn't a done deal by any means.

>

> ;-)

> in Ma.

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

>

>

[Guest guest]

This seems real basic, but: The one thing that worked for us to get

insurance to cover feeding therapy (OT) was to ask how much longer they

preferred to pay for formula, Pediasure or Boost. Our doctor wrote many

letters, but the last one backed up this point of view. He also noted that

without therapy, would possibly NEVER eat orally. When looked at

over the long haul, they decided it was in their best interests to assist in

covering the feeding program.

We used similar arguments when they were going to take away nursing hours

while was still trached. He basically stated: You can take away

the nursing hours, exhaust Mom & Dad and pay for their recovery in a

hospital; as well as pay ICU for when Mom & Dad are exhausted and

can't function well enough to care for her. Or you can continue to cover

the cost of nursing for 12 hours a day, 6 days a week for a trached and

g-tube fed child. They opted to continue to cover the nursing costs.

If you and your doctors can convince them that they will spend less over the

lifespan if the costs are incurred now, it saves so much wrangling and

hassle. You need to have a doctor who has a way with words - as well as a

bit of arrogance (in the good sense of the word)! And you DO need to

address this to a Supervisor. Insurance reps reached via the toll free

numbers are usually looking at standardized care allowances; meaning most

policies cover X, X and X. The reps don't always understand the nuances of

different policies. We finally got in contact with a care coordinator

within the insurance company after 18 months of pleading our case. Things

went so much better from that point on. If we got an answer from a rep that

we felt was not correct, we contacted her and she straightened things out.

I can't emphasize enough about getting someone to represent you within the

insurance company, be it a supervisor or care coordinator. Preferable is

one who has nursing experience. (And I can't stress the " experience " aspect

enough. Our first one was straight from college with only the required

field experience needed to get her diploma. She was horrible: " What do you

do when you take her shopping? " I NEVER was able to take her anywhere but

doctors for those first 20 months because she was so unstable!) Your

employer's benefits department should be able to help you also.

Good luck, and find a good doctor who writes great letters!

Friends in CHARGE,

Marilyn Ogan

Mom of (14, CHARGE+, JRA)

Mom of Ken (17, Aspergers)

Wife of Rick

oganm@...

[Guest guest]

sometimes in some of our friends fam out hre we say we should get

the certain person to come live with us for a week LOL and they shluld do

same with u

>

> This seems real basic, but: The one thing that worked for us to get

> insurance to cover feeding therapy (OT) was to ask how much longer they

> preferred to pay for formula, Pediasure or Boost. Our doctor wrote many

> letters, but the last one backed up this point of view. He also noted that

> without therapy, would possibly NEVER eat orally. When looked at

> over the long haul, they decided it was in their best interests to assist

> in

> covering the feeding program.

>

> We used similar arguments when they were going to take away nursing hours

> while was still trached. He basically stated: You can take away

> the nursing hours, exhaust Mom & Dad and pay for their recovery in a

> hospital; as well as pay ICU for when Mom & Dad are exhausted and

> can't function well enough to care for her. Or you can continue to cover

> the cost of nursing for 12 hours a day, 6 days a week for a trached and

> g-tube fed child. They opted to continue to cover the nursing costs.

>

> If you and your doctors can convince them that they will spend less over

> the

> lifespan if the costs are incurred now, it saves so much wrangling and

> hassle. You need to have a doctor who has a way with words - as well as a

> bit of arrogance (in the good sense of the word)! And you DO need to

> address this to a Supervisor. Insurance reps reached via the toll free

> numbers are usually looking at standardized care allowances; meaning most

> policies cover X, X and X. The reps don't always understand the nuances of

> different policies. We finally got in contact with a care coordinator

> within the insurance company after 18 months of pleading our case. Things

> went so much better from that point on. If we got an answer from a rep

> that

> we felt was not correct, we contacted her and she straightened things out.

> I can't emphasize enough about getting someone to represent you within the

> insurance company, be it a supervisor or care coordinator. Preferable is

> one who has nursing experience. (And I can't stress the " experience "

> aspect

> enough. Our first one was straight from college with only the required

> field experience needed to get her diploma. She was horrible: " What do you

> do when you take her shopping? " I NEVER was able to take her anywhere but

> doctors for those first 20 months because she was so unstable!) Your

> employer's benefits department should be able to help you also.

>

> Good luck, and find a good doctor who writes great letters!

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (14, CHARGE+, JRA)

>

> Mom of Ken (17, Aspergers)

>

> Wife of Rick

>

> oganm@...

>

>

[Guest guest]

Crystal,

I think you should request an IFSP meeting with Eva's " team " (As the parent,

you can request one at any time), and then get the gait trainer and feeding

therapy written into the IFSP. If it's in the IFSP, then Early Intervention HAS

to pay for it as payor of last resort. I know you are great advocate for Eva,

and can explain to them how crucial both of these things are for her continued

progress. Don't sign off on the IFSP until your concerns are addressed.

Hugs,

(mom to Evan, 21 months)

supermama95 supermama95@...> wrote:

Just as Eva was starting to walk the therapists who loaned us her gait

trainer is taking it back. She was just starting to learn to move with

it and now on friday they are coming to take it away.

ALSO we lost our feeding therapist because our insurance doesnt want

to pay for it. And because of whatever reason the insurance will not

pay is not a good enough reason for EI to take over the payments.

SO here we were taking steps ahead and now they are being taken away.

I am so crushed and so disappointed I just want to cry.

We raised about $6,000 at the benefit but that is going to pay her

medical bills and the money from our house closeing is going to a van

so we can take her wheelchair places.

Her PT said she was going to order her a gait trainer but the last

order took 7 months and she can't do it til the next meeting in Sept.

I am so mad I want to scream!!!

Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

to Dan in Illinois

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

(((HUGS)))

oh crystal im sorry to hear that ...

Belinda

[Guest guest]

I'm sorry to hear of your setbacks i hope everything looks up soon

Mommy to 19 month old CHARGEr

supermama95 supermama95@...> wrote:

Just as Eva was starting to walk the therapists who loaned us her gait

trainer is taking it back. She was just starting to learn to move with

it and now on friday they are coming to take it away.

ALSO we lost our feeding therapist because our insurance doesnt want

to pay for it. And because of whatever reason the insurance will not

pay is not a good enough reason for EI to take over the payments.

SO here we were taking steps ahead and now they are being taken away.

I am so crushed and so disappointed I just want to cry.

We raised about $6,000 at the benefit but that is going to pay her

medical bills and the money from our house closeing is going to a van

so we can take her wheelchair places.

Her PT said she was going to order her a gait trainer but the last

order took 7 months and she can't do it til the next meeting in Sept.

I am so mad I want to scream!!!

Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

to Dan in Illinois

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Crystal,

Navigating insurance is hard...harder with a child with special needs.....

I would ask to speak to a supervisor at the insurance company and ask that

person to put their reasons for denying gait trainer and feeding specialist in

writing.

Having that information will make it easier to move forward.

Do you have in IL something like here in CT we call it Title V Children with

special health care needs?

Also " pay-or of last resort " generally only help out if it is your commercial

insurance policy does not cover. If you receive any state medicaid you will not

qualify.

When we were looking to donate a spika cast stroller and car seat I went to

" Special Child " and they had a classified section where you can donate items to

families that need it...They no longer have that but you might be able to find a

website where you can find someone who is looking to donate their old gait

trainer...Many people look for donate their old items....

Feeding specialist ...harder to get....will Eva's doctor order as a medical

necessity?

's doctor ordered feeding specialist 6 months..Insurance paid then decided

to deny...stating non medical necessity...as soon as the doctor ordered as

medical necessity it resumed.

I will look around for some places ...

Ellen mom to 9

[Guest guest]

Crystal,

This is not fair! We have to go through enough as it is without having the

things our child needs taken away! I don't know what kind of feeding therapy

you were doing but we had an occupational therapist that specialized in feeding

through early intervention. I would fight for it!

~

Mom of Jack (7mo. CHARGEr)

Re: Just as she was moving forward......

Hey Crystal, Eva and Family!!

PUSH this issue!!!! Find out why EI won't pay for the feeding

therapist-I thought they are supposed to! I thought they are

supposed to bill your insurance, get the denial then bill the state.

I know this is frustrating and I don't blame you for not feeling

like a battle-like you don't already have enough, right? You can

also request a 6-month meeting with EI and maybe then the gait

trainer can be added to the IFSP.

I feel for you on this one. You'll get it straightened out, don't

worry!!!

Janay

>

> Just as Eva was starting to walk the therapists who loaned us her

gait

> trainer is taking it back. She was just starting to learn to move

with

> it and now on friday they are coming to take it away.

> ALSO we lost our feeding therapist because our insurance doesnt

want

> to pay for it. And because of whatever reason the insurance will

not

> pay is not a good enough reason for EI to take over the payments.

> SO here we were taking steps ahead and now they are being taken

away.

> I am so crushed and so disappointed I just want to cry.

> We raised about $6,000 at the benefit but that is going to pay her

> medical bills and the money from our house closeing is going to a

van

> so we can take her wheelchair places.

> Her PT said she was going to order her a gait trainer but the last

> order took 7 months and she can't do it til the next meeting in

Sept.

> I am so mad I want to scream!!!

> Crystal mom to (11), (4), and Eva (2 year old CHARGEr)

wife

> to Dan in Illinois

>

__________________________________________________

[Guest guest]

Crystal--

Eddie has a kaye walker that he never used much. He was never willing

to hold on long enough to pull it along; he's walking independently

now, as long as we're going in the direction he wants to go. If you

can't find one closer to home and you think Eva can use it I'll get it

out of storage (or my mom's basment) and send it to you. Just let me

know.

joanne

> Just as Eva was starting to walk the therapists who loaned us her gait

> trainer is taking it back. She was just starting to learn to move with

> it and now on friday they are coming to take it away.

> ALSO we lost our feeding therapist because our insurance doesnt want

> to pay for it. And because of whatever reason the insurance will not

> pay is not a good enough reason for EI to take over the payments.

> SO here we were taking steps ahead and now they are being taken away.

> I am so crushed and so disappointed I just want to cry.

> We raised about $6,000 at the benefit but that is going to pay her

> medical bills and the money from our house closeing is going to a van

> so we can take her wheelchair places.

> Her PT said she was going to order her a gait trainer but the last

> order took 7 months and she can't do it til the next meeting in Sept.

> I am so mad I want to scream!!!

> Crystal mom to (11), (4), and Eva (2 year old CHARGEr)wife

> to Dan in Illinois

[Guest guest]

Also " pay-or of last resort " generally only help out if it is your commercial

insurance policy does not cover. If you receive any state medicaid you will not

qualify.

I don't totally agree with this. If you have Medicaid, and the provider you

go to takes Medicaid patients they have signed a contract stating they will

accept whatever Medicaid pays as payment in full. So as long as whatever you

need is covered benefit under Medicaid, there won't be anything left over for

the payor of last resort to pay.

If Medicaid is secondary to private insurance, then the provider has to write

off the balance that the primary insurance didn't cover. This is because

Medicaid always (with incredibly rare exception) would have paid less (if they

had been primary) than the primary insurance did. And Medicaid won't pay any

additional money on a claim that was reimburse more than they would have paid.

Confused yet?

If what your child needs is not something that he/she has Medicaid benefits

for (in Washington State for example, Evan periodically gets a coupon as

secondary that only covers medical visits, NO outpatient therapies), you can

make the argument that it is still necessary and write it into the IFSP. If

there is no one else to pay for the service, then early intervention is required

by law to find money to pay for it.

Even though we have a medical coupon (sometimes), we still have been able to

get early intervention to pay for speech therapy once our primary insurance

benefits were exhausted.

(mom to Evan, 21 months)

Ellen Steinbrick esteinbrick@...> wrote:

Crystal,

Navigating insurance is hard...harder with a child with special needs.....

I would ask to speak to a supervisor at the insurance company and ask that

person to put their reasons for denying gait trainer and feeding specialist in

writing.

Having that information will make it easier to move forward.

Do you have in IL something like here in CT we call it Title V Children with

special health care needs?

Also " pay-or of last resort " generally only help out if it is your commercial

insurance policy does not cover. If you receive any state medicaid you will not

qualify.

When we were looking to donate a spika cast stroller and car seat I went to

" Special Child " and they had a classified section where you can donate items to

families that need it...They no longer have that but you might be able to find a

website where you can find someone who is looking to donate their old gait

trainer...Many people look for donate their old items....

Feeding specialist ...harder to get....will Eva's doctor order as a medical

necessity?

's doctor ordered feeding specialist 6 months..Insurance paid then decided

to deny...stating non medical necessity...as soon as the doctor ordered as

medical necessity it resumed.

I will look around for some places ...

Ellen mom to 9