Medicaid and transplant coverage? OH and what about disability?

[Guest guest]

Sorry to bring all this to you all…

I am trying not to panic too much…but also be

prepared. Rob and I are divorcing, and in addition he lost his job last

week, so no private insurance for Noah any more.

Noah has been on Medicaid for a while. (PA Medicaid

for his disability.) It has basically been covering our copays and our prescription…copays…which

had gotten very hefty. It helped cover some hefty family deductibles that

needed to be met when Noah was diagnosed.

So now I am REALLY glad we have it. But my question is…will

this alone cover a transplant? When it is needed?

And also, I applied several months ago for disability

(Medicare) upon the advice of several moms on the Liver Families forum…and

I guess I am wondering if many here are on that for PSC…and if so…how

hard it was to get on? And does that also put you on Medicare for

insurance? And if so what would THAT do with Medicaid for transplant

coverage?

I know we all sort of joke about the beloved wallet biopsy…but

I don’t think it is very funny…if my son would be denied or any of

us for that matter. I need to get prepared and do what is needed to get

him taken care of.

The trying not to be stressed mom of 3 wonderful kids and 2

crazy dogs,

www.caringbridge.org/pa/nwmartens

(older original site)

www.caringbridge.org/visit/noahwmartens

(newer w/current updates)

[Guest guest]

Rob and I are

> divorcing, and in addition he lost his job last week, so no private

> insurance for Noah any more.

> The trying not to be stressed mom of 3 wonderful kids and 2 crazy

dogs,

>

>

Hi

Best wishes for the future.....my goodness everything is happening at

once for you, just remember to look after yourself first, so you can

look after everyone else!!!

thinkng of you, Noah and all the family

[Guest guest]

Thanks so much ! I have tried

for a long time to keep things together for the sake of the family so I think

doing this divorce is finally doing something for me.

I am sad though. He has hurt me and

my family tremendously though. It will be a tough few months.

I WILL make it though. Women do that

you know. J Moms especially! Don’t mess with a mom.

My break from him in Hawaii gave me lots of clarity.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

Hi

Best wishes for the future.....my goodness everything is happening at

once for you, just remember to look after yourself first, so you can

look after everyone else!!!

thinkng of you, Noah and all the family

[Guest guest]

To my knowledge, medicaid will NOT deny him his transplant when the time comes. This is the only insurance has, and it covered his lung transplant and approved his liver transplant, whether it's living or cadaveric donor. Also, like I said before for the SSI, make sure that you have everything documented at the doctors, including his HE and what the effects of that are. Any depression/anxiety he may have as a result of being sick and their effects, etc. Number of days of school missed because of being sick will also come into play there, as it affects your ability to be a reliable employee. Every bit of it is important. Maybe even statements from his teachers regarding his being tired, irritable, whatever while IN school. If he gets denied for SSI, appeal it. Chances are the denial would be based on not having adequate enough information, so just make sure you get more. And once you and Rob are in seperate homes, inform your medicaid worker. Make sure they know NOW that as of the 1st you know longer have other health insurance coverage. And beyond that, sweetie, I'm proud of you for doing what you need to do. I'm here if you need to talk. I know it's going to be a tough road for a while, but don't ever forget you have friends and people who care about you. Ami wrote: Sorry to bring all this to you all… I am trying not to panic too much…but also be prepared. Rob and I are divorcing, and in addition he lost his job last week, so no private insurance for Noah any more. Noah has been on Medicaid for a while. (PA Medicaid for his disability.) It has basically been covering our copays and our prescription…copays…which had gotten very hefty. It helped cover some hefty family deductibles that needed to be met when Noah was diagnosed. So now I am REALLY glad we have it. But my question is…will this alone cover a transplant? When it is needed? And also, I applied several months ago for disability (Medicare) upon the advice of several moms on the Liver Families forum…and I guess I am wondering if many here are on that for PSC…and if so…how hard it was to get on? And does that also put you on Medicare for insurance? And if so what would THAT do with Medicaid for transplant coverage? I know we all sort of joke about the beloved wallet biopsy…but I don’t think it is very funny…if my son would be denied or any of us for that matter. I need to get prepared and do what is needed to get him taken care of. The trying not to be stressed mom of 3 wonderful kids and 2 crazy dogs, www.caringbridge.org/pa/nwmartens (older original site) www.caringbridge.org/visit/noahwmartens (newer w/current updates) Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________Do You

Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com

[Guest guest]

Thanks Ami,

I appreciate the insight.  Okay, I guess I

just sit tight and wait on the disability stuff.  He started in on diarrhea.  L  So sad for the kiddos.

(Zoë is fine.)  Boys don’t know what

all he has done though.

I did apply for all the help I could

online yesterday.  I am also looking for work…the work from home stuff…now

that my medical transcription class is done.

That way I can be here for Noah. 

(and the other two)

Much love,

P.S.  Hope is doing okay.

Are you still in the cool Adopt-A-Room?

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

And beyond that, sweetie, I'm proud of you for doing what you need to

do. I'm here if you need to talk. I know it's going to be a tough

road for a while, but don't ever forget you have friends and people who care

about you.

[Guest guest]

Individual states have a lot of say in the administration of

Medicaid, so there are significant variations.

But Illinois Medicaid has paid well more than a $1 million for

Quantell's care, without even blinking. Going to specialists is a

whole lot easier with Medicaid than with an HMO.

When he was first listed for tx, I specifically asked the social

worker if Medicaid would pose any problems. He told me that the

hospital would actually be paid more from Medicaid than they would

from private insurance (because they're a disporportinate care urban

facility).

The one problem you could run into is if you want to have the surgery

in a state that's different from the one where you have the Medicaid.

In that case, you will likely have to pre-certify, and you may be

limited in your choices. (But again, you won't be limited nearly as

much as you would be with an HMO.)

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrance with AIH

overlap 2006)

[Guest guest]

Pam,

Ok, I like the sound of that…I

intend to get work…and hopefully that will provide benefits, but he is

pre-existing, so I don’t know how all that plays in. I just don’t

want to worry about all of that. I did go online last night and apply for

everything I could through the state…prior to it actually expiring at the

end of the month figuring if they wanted to they could pay the COBRA if they

decided that was more affordable. I just want all options out

there. I don’t think anything with Noah is eminent…but who

knows. I think that he might have early HE going on…but they are

not treating it. I just don’t want the other shoe to drop and for

this little guy to be in trouble.

Thankfully we are lucky to be living in PA

and happy to be treated at CHP (UPMC). Let’s just hope when it is

time the list is not too long, or they are able to use me as a donor.

I hope Q is doing well.

Love,

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

When went on disability he was automaticly put on Medicaid. We have Blue Cross through my work but I was afraid that if he was not well enough to go to school he would come off my insurance after 18. The day he turned 18 I got a letter from BC saying if they did not have proof he was in college full time he would be dropped immediately. I have kept both insurance and Medicaid for him. Blue Cross was necessary cause he went out of state for his tx and Medicaid would not cover that. It does cover his meds though and my insurance does not. Does your son have a case worker at the Medicaid disability office? We connected up with a woman that was more than willing to help someone who deserved it. She said she was tired of being forced to give aid to people that were not disabled but too lazy to get a job. She bent over backwards to explain to us what paperwork we needed and and what would be covered. Good Luck and God Bless Marti wrote: Sorry to bring all this to you all… I am trying not to panic too much…but also be prepared. Rob and I are divorcing, and in addition he lost his job last week, so no private insurance for Noah any more. Noah has been on Medicaid for a while. (PA Medicaid for his disability.) It has basically been covering our copays and our prescription…copays…which had gotten very hefty. It helped cover some hefty family deductibles that needed to be met when Noah was diagnosed. So now I am REALLY glad we have it. But my question is…will this alone cover a transplant? When it is needed? And also, I applied several months ago for disability (Medicare) upon the advice of several moms on the Liver Families forum…and I

guess I am wondering if many here are on that for PSC…and if so…how hard it was to get on? And does that also put you on Medicare for insurance? And if so what would THAT do with Medicaid for transplant coverage? I know we all sort of joke about the beloved wallet biopsy…but I don’t think it is very funny…if my son would be denied or any of us for that matter. I need to get prepared and do what is needed to get him taken care of. The trying not to be stressed mom of 3 wonderful kids and

2 crazy dogs, www.caringbridge.org/pa/nwmartens (older original site) www.caringbridge.org/visit/noahwmartens (newer w/current updates) __________________________________________________

[Guest guest]

Interesting, and a good point. I

will have to call our caseworker. I am always scared to do so. I

don’t want to appear to want a handout. But this is a new/different

situation and he deserves the best I can get for him. None of this is his

fault or any of the PSCers. (Much less what his father is up to—but

that is a sidenote.)

I will go down there…or make an

appointment to do so. I do better face to face.

Hopefully Noah can stay in state when the

time comes…hopefully I can find a work from home job…with benefits…so

that I can care for him when he is sick more often which I know will happen…how

the heck do they expect you to do this otherwise?

AHHHH!

Thanks Marti,

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthoesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

It must vary by state as far as paying for tx or other services outside of that state. We're from Wisconsin, but have been in Minnesota for over a year with all of 's medical stuff. He had his lung tx here, and will be having his liver tx here. That's probably something to ask the worker about. Whether they would cover transplant in another state if it was necessary. AmiMarti wrote: When

went on disability he was automaticly put on Medicaid. We have Blue Cross through my work but I was afraid that if he was not well enough to go to school he would come off my insurance after 18. The day he turned 18 I got a letter from BC saying if they did not have proof he was in college full time he would be dropped immediately. I have kept both insurance and Medicaid for him. Blue Cross was necessary cause he went out of state for his tx and Medicaid would not cover that. It does cover his meds though and my insurance does not. Does your son have a case worker at the Medicaid disability office? We connected up with a woman that was more than willing to help someone who deserved it. She said she was tired of being forced to give aid to people that were not disabled but too lazy to get a job. She bent over backwards to explain to us what paperwork we needed and and what would be covered. Good Luck and God Bless Marti

<kickkat17mom (AT) comcast (DOT) net> wrote: Sorry to bring all this to you all… I am trying not to panic too much…but also be prepared. Rob and I are divorcing, and in addition he lost his job last week, so no private insurance for Noah any more. Noah has been on Medicaid for a while. (PA Medicaid for his disability.) It has basically been covering our copays and our prescription…copays…which had gotten very hefty. It helped cover some hefty family deductibles that needed

to be met when Noah was diagnosed. So now I am REALLY glad we have it. But my question is…will this alone cover a transplant? When it is needed? And also, I applied several months ago for disability (Medicare) upon the advice of several moms on the Liver Families forum…and I guess I am wondering if many here are on that for PSC…and if so…how hard it was to get on? And does that also put you on Medicare for insurance? And if so what would THAT do with Medicaid for transplant coverage? I know we all sort of joke about the beloved wallet biopsy…but I don’t think it is very funny…if my son would be denied or any of us for that matter. I need to get prepared and do what is needed to get him taken care of. The trying not to be stressed mom of 3 wonderful kids and 2 crazy dogs, www.caringbridge.org/pa/nwmartens (older original site) www.caringbridge.org/visit/noahwmartens (newer w/current updates) __________________________________________________