Disability Coverage

[Guest guest]

Hey everyone,

I was wanting some advice from those of you who have gone to task

with insurance and other providers. In Ontario there is a Child

Disability Payment that is available to children with disabilities.

However there is an income cut-off which is fairly low. And based on

income we wouldn't qualify....however we feel this is unfair as

Josiah is being followed for a multitude of issues (as you can all

relate to) and sees 18 professionals for his ongoing care.....his

costs are exceptional and we are writing a letter now to try and beg

them to reconsider based on need not solely on income....I know some

of you out there have been on similar battles before and I am looking

for some advice on what to write....to explain briefly RSS and to

convince them of the exception they need to make in our case due to

the multiple factors of RSS and given the preexistiting issues he has

with prematurity, multiple severe food allergies and some new

neurological issues that are as of yet undiagnosed.

Please help us in getting this letter done.

Thanks so much,

R,

Mom to Josiah, RSS, 28 months, NG tube

[Guest guest]

Hey : This is Sheldon from North Dakota. My daughter's name is

to. My Granddaughter's name is Laikyn who has RSS and is 3 years old. I am going

to try and answer this the best i can, but being you live in Canada i don't know

how well it will work. You probably do not know this but and i and

several other people and agencies took on our State Legislature to get help for

Laikyn. She is the only Diagnosed case of RSS in the State. And we won. Here is

what you will probably have to do. Find out how many other kids have it in your

area. Find out if there are any Dr.s that are aware of RSS. In our case there

was not one Dr. in ND that was Familiar with RSS. Figure travel costs to see

that Dr. Does Josh need or have a feeding tube , types of meds, types of

special care. Basically anything tied to his Illness you must dictate.That

includes cost of everything. do not leave anything unturned. Tell them how easy

it is for him to catch a cold and what happens if he does. If you have to appear

in front of a board than do it. and take Josh with you. We took Laikyn to just

about every hearing we had and let me tell you there were lots of them. People

fell in love with her. They see the child first hand and realize it and can put

a face on what you are talking about. I do not know how it is in Canada but find

out all the politicians you can and write them an e-mail it works. One night i

sat here at the computor and wrote almost 90 e-mail to every politician in the

state. I called our Governor, our 2 state Senators, had a personal metting with

one after i tracked him down at a political rally, talked to our congressman,

mayor you name them and i tried to talk to them. Its a lot of work but you know

what i would do it in a heartbeat again for her if i had to. She is my little

angel girl. If you have any Questions and want to e-mail me directly you can at

ssime@.... I will be glad to help you in any way i can.

Hugs

Sheldon(G-Pa to Laikyn RSS)

Disability Coverage

Hey everyone,

I was wanting some advice from those of you who have gone to task

with insurance and other providers. In Ontario there is a Child

Disability Payment that is available to children with disabilities.

However there is an income cut-off which is fairly low. And based on

income we wouldn't qualify....however we feel this is unfair as

Josiah is being followed for a multitude of issues (as you can all

relate to) and sees 18 professionals for his ongoing care.....his

costs are exceptional and we are writing a letter now to try and beg

them to reconsider based on need not solely on income....I know some

of you out there have been on similar battles before and I am looking

for some advice on what to write....to explain briefly RSS and to

convince them of the exception they need to make in our case due to

the multiple factors of RSS and given the preexistiting issues he has

with prematurity, multiple severe food allergies and some new

neurological issues that are as of yet undiagnosed.

Please help us in getting this letter done.

Thanks so much,

R,

Mom to Josiah, RSS, 28 months, NG tube

[Guest guest]

Sheldon

I know you have said this before, but what did you manage to " win " ? I know the

insurance coverage is different in the US from us in Canada, but we would need

to fight for RSS treatment to be covered by the government. What did you fight

your government to give you guys exactly>

It might help me figure out if we can do anything up here.

Thanks for being such an amazing advocate.

Deb

Disability Coverage

Hey everyone,

I was wanting some advice from those of you who have gone to task

with insurance and other providers. In Ontario there is a Child

Disability Payment that is available to children with disabilities.

However there is an income cut-off which is fairly low. And based on

income we wouldn't qualify....however we feel this is unfair as

Josiah is being followed for a multitude of issues (as you can all

relate to) and sees 18 professionals for his ongoing care.....his

costs are exceptional and we are writing a letter now to try and beg

them to reconsider based on need not solely on income....I know some

of you out there have been on similar battles before and I am looking

for some advice on what to write....to explain briefly RSS and to

convince them of the exception they need to make in our case due to

the multiple factors of RSS and given the preexistiting issues he has

with prematurity, multiple severe food allergies and some new

neurological issues that are as of yet undiagnosed.

Please help us in getting this letter done.

Thanks so much,

R,

Mom to Josiah, RSS, 28 months, NG tube