Any thoughts???

[Guest guest]

Most states do have some sort of wavier problem for medically fragile children. They do, usually, factor in family income. In our state it took me having to quit my job all together to get the extra assistance, and we still were denied this year (but did win the appeal). The program we have, pays all the copays on prescriptions and doctor visits for us. They also pick up things after insurance is exhausted (speech therapy, OT, medical supplies, ect..) Yes, SSI does count family income, and all of your assets (cars, home ect.). Some states are better than others. In our state, Ohio, there is a Medicaid program that only factors in the child's assets, but it is designed for people with more needs than Grace has at this point.

I would call your local Human Services Department, or local Health Department. I am sure there is some type of program in your state. I know, for us, the extra program saves us at least $300 a month on just prescription copays. I don't know how we would handle it if we lost it.

[Guest guest]

Hi all,

As Asher has now been 3 months with dx of mito, and as he has continued on the

g-tube, and had some recently identified other symptoms (i.e. hearing loss), I

am realizing just how much the financial strain is of this disease. Between

supplements and formula that is not covered, and medical bills that insurance

won't cover (thankfully, we have insurance), doctors in other parts of the

country we need to see, and the various co-pays for therapies, etc., we are

spending a good deal of money. If you don't mind, I'm interested in hearing how

you all have managed - and, if you have found programs that will pay for

secondary insurance,waivers based on disability (not family income)... etc. And,

how you all have found those programs. Is it true that SSI-disability takes the

family income into account? My husband and I both work (alas, I am quite

part-time - which is part of the problem - at this point b/c of my son's needs).

I'm interested in your thoughts. I've read somewhere that the state of Florida

(where we live) has a waiver program but they only give out some pathetic number

like 10 a year.

Thanks,

Anne R

[Guest guest]

I recently applied for SSI and was told that it's based on

household income. We don't qualify even though I can't work because I

have to take care of Sheldon. We're applying for a medicaid waiver

(NY) but it's a long process. We are also looking for answers... by

the way, if anyone is in NY state, the Child Health Plus program is

great, there are no copays.

Hi all,

As Asher has now been 3 months with dx of mito, and as he has

continued on the g-tube, and had some recently identified other

symptoms (i.e. hearing loss), I am realizing just how much the

financial strain is of this disease. Between supplements and formula

that is not covered, and medical bills that insurance won't cover

(thankfully, we have insurance), doctors in other parts of the country

we need to see, and the various co-pays for therapies, etc., we are

spending a good deal of money. If you don't mind, I'm interested in

hearing how you all have managed - and, if you have found programs

that will pay for secondary insurance,waivers based on disability (not

family income)... etc. And, how you all have found those programs. Is

it true that SSI-disability takes the family income into account? My

husband and I both work (alas, I am quite part-time - which is part of

the problem - at this point b/c of my son's needs). I'm interested in

your thoughts. I've read somewhere that the state of Florida (where we

live) has a waiver program but they only give out some pathetic number

like 10 a year.

Thanks,

Anne R

Please contact mito-owner with any problems or

questions.

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[Guest guest]

There is a website called Brave Kids, www.bravekids.org I think, that finds resources to match your diagnosis and state you live in along with specific need if you request. It is a comprehensive site and may help. If the link I typed is not correct, just enter Brave Kids in your search engine. This is a very expensive illness to deal with for many reasons, it would be a tremendous help if insurance companies would cover CoQ10 and other supplements as they are more medicinal than supplemental for our children.

Joni

Any thoughts???

Hi all,As Asher has now been 3 months with dx of mito, and as he has continued on the g-tube, and had some recently identified other symptoms (i.e. hearing loss), I am realizing just how much the financial strain is of this disease. Between supplements and formula that is not covered, and medical bills that insurance won't cover (thankfully, we have insurance), doctors in other parts of the country we need to see, and the various co-pays for therapies, etc., we are spending a good deal of money. If you don't mind, I'm interested in hearing how you all have managed - and, if you have found programs that will pay for secondary insurance,waivers based on disability (not family income)... etc. And, how you all have found those programs. Is it true that SSI-disability takes the family income into account? My husband and I both work (alas, I am quite part-time - which is part of the problem - at this point b/c of my son's needs). I'm interested in your thoughts. I've read somewhere that the state of Florida (where we live) has a waiver program but they only give out some pathetic number like 10 a year.Thanks,Anne RPlease contact mito-owner with any problems or questions.

[Guest guest]

A good place to also start is with a county social worker or your

local school district. Your school district will have lots of

information about county and state programs. The county social

worker along with your district will help you fill out the paper

work. We live in Minnesota and have a waiver program that we pay an

excessive amount of money for, however when I look at how much they

kick in when insurance does not it is totally worth it. On top of

paying the insurance extras we get 45 hours of PCA a week. You need

to look at all of the benefits you can receive before deciding if

the cost is too much. Good luck, this is an expensive disease.

Geri-Anne and Wyatt, Complex I

> Hi all,

>

> As Asher has now been 3 months with dx of mito, and as he has

continued on the g-tube, and had some recently identified other

symptoms (i.e. hearing loss), I am realizing just how much the

financial strain is of this disease. Between supplements and formula

that is not covered, and medical bills that insurance won't cover

(thankfully, we have insurance), doctors in other parts of the

country we need to see, and the various co-pays for therapies, etc.,

we are spending a good deal of money. If you don't mind, I'm

interested in hearing how you all have managed - and, if you have

found programs that will pay for secondary insurance,waivers based

on disability (not family income)... etc. And, how you all have

found those programs. Is it true that SSI-disability takes the

family income into account? My husband and I both work (alas, I am

quite part-time - which is part of the problem - at this point b/c

of my son's needs). I'm interested in your thoughts. I've read

somewhere that the state of Florida (where we live) has a waiver

program but they only give out some pathetic number like 10 a year.

>

> Thanks,

> Anne R