Transplants and Trust Funds

T

theLostMiler

New member
Ive done some research slightly, but transplant has become more of a pressing issue (not listed but seems inevitable in the near-ish future).

I get SSDI and SSI and I know a regular trust fund will screw one or both of those up (I cant remember which) b/c it will be countable income (which means it will be SSI, but I just want to be sure)

One of my cousins knows a lot and/or has done lots of research I guess and suggested something like "A special needs account" or something to my mom. My mom also apparently read about it in the CF RoundTable in the Beth Sullivan, Ask the Lawyer bit... I havent seen it yet (I dont live at home)...

My mom has begun planning a fundraiser for me in my honor under this "special needs account" idea... I am very worried the gov't will count this still and the money will either be taken away or my montly income will be cut.

Ive done some googling and the only thing I can find is "A Supplemental or Special Needs Trust" which isnt considered countable by the gov't. The site I was on emphasizes the legal wording of the set up of the account though and I dont think my mom has contacted a lawyer and doesnt sound like she thinks she needs too.

I also went to the CFF site and couldnt find any information there and did a quick search on here but I only found one topic about tx and trust funds but it was started by Jerry Cahill about getting information for a pamphlet... no one answering mentioned anything about gov't issues.


I also googled Trust funds, b/c I am slightly confused on the basic idea of how they work... so if someone can give me a basic "laymans" terms definition that would be great (sorry I am so dumb w/ that kind of stuff).

I would like some tips on how to go about this and what people do when they are on gov't income and want to have fundraising done for future tx costs.

Also can it be a generic "medical needs/costs" instead of only used for transplant

And if I need to talk to a lawyer for all this let me know haha.
 
T

theLostMiler

New member
Ive done some research slightly, but transplant has become more of a pressing issue (not listed but seems inevitable in the near-ish future).

I get SSDI and SSI and I know a regular trust fund will screw one or both of those up (I cant remember which) b/c it will be countable income (which means it will be SSI, but I just want to be sure)

One of my cousins knows a lot and/or has done lots of research I guess and suggested something like "A special needs account" or something to my mom. My mom also apparently read about it in the CF RoundTable in the Beth Sullivan, Ask the Lawyer bit... I havent seen it yet (I dont live at home)...

My mom has begun planning a fundraiser for me in my honor under this "special needs account" idea... I am very worried the gov't will count this still and the money will either be taken away or my montly income will be cut.

Ive done some googling and the only thing I can find is "A Supplemental or Special Needs Trust" which isnt considered countable by the gov't. The site I was on emphasizes the legal wording of the set up of the account though and I dont think my mom has contacted a lawyer and doesnt sound like she thinks she needs too.

I also went to the CFF site and couldnt find any information there and did a quick search on here but I only found one topic about tx and trust funds but it was started by Jerry Cahill about getting information for a pamphlet... no one answering mentioned anything about gov't issues.


I also googled Trust funds, b/c I am slightly confused on the basic idea of how they work... so if someone can give me a basic "laymans" terms definition that would be great (sorry I am so dumb w/ that kind of stuff).

I would like some tips on how to go about this and what people do when they are on gov't income and want to have fundraising done for future tx costs.

Also can it be a generic "medical needs/costs" instead of only used for transplant

And if I need to talk to a lawyer for all this let me know haha.
 
T

theLostMiler

New member
Ive done some research slightly, but transplant has become more of a pressing issue (not listed but seems inevitable in the near-ish future).
<br />
<br />I get SSDI and SSI and I know a regular trust fund will screw one or both of those up (I cant remember which) b/c it will be countable income (which means it will be SSI, but I just want to be sure)
<br />
<br />One of my cousins knows a lot and/or has done lots of research I guess and suggested something like "A special needs account" or something to my mom. My mom also apparently read about it in the CF RoundTable in the Beth Sullivan, Ask the Lawyer bit... I havent seen it yet (I dont live at home)...
<br />
<br />My mom has begun planning a fundraiser for me in my honor under this "special needs account" idea... I am very worried the gov't will count this still and the money will either be taken away or my montly income will be cut.
<br />
<br />Ive done some googling and the only thing I can find is "A Supplemental or Special Needs Trust" which isnt considered countable by the gov't. The site I was on emphasizes the legal wording of the set up of the account though and I dont think my mom has contacted a lawyer and doesnt sound like she thinks she needs too.
<br />
<br />I also went to the CFF site and couldnt find any information there and did a quick search on here but I only found one topic about tx and trust funds but it was started by Jerry Cahill about getting information for a pamphlet... no one answering mentioned anything about gov't issues.
<br />
<br />
<br />I also googled Trust funds, b/c I am slightly confused on the basic idea of how they work... so if someone can give me a basic "laymans" terms definition that would be great (sorry I am so dumb w/ that kind of stuff).
<br />
<br />I would like some tips on how to go about this and what people do when they are on gov't income and want to have fundraising done for future tx costs.
<br />
<br />Also can it be a generic "medical needs/costs" instead of only used for transplant
<br />
<br />And if I need to talk to a lawyer for all this let me know haha.
 
M

mag6125

New member
We're going through the National Foundation for Transplants, they set up an account and it doesnt count against ssi or ssdi. They also help with publicity for fundraisers you do, etc. You should check them out.
 
M

mag6125

New member
We're going through the National Foundation for Transplants, they set up an account and it doesnt count against ssi or ssdi. They also help with publicity for fundraisers you do, etc. You should check them out.
 
M

mag6125

New member
We're going through the National Foundation for Transplants, they set up an account and it doesnt count against ssi or ssdi. They also help with publicity for fundraisers you do, etc. You should check them out.
 
C

chuckstyl5

New member
+1 for NTAFUND.ORG .. They rock I have a fund there for my transplant with over $25,000+ its been there for about 3 years and we are constantly doing fundraisers for it - Whether its a large one or just coin boxes at local deli's, gas stations, etc it all helps!!!

Here is what my company did for me
<a target=_blank class=ftalternatingbarlinklarge href="http://www.redbankgreen.com/2008/06/red-bank-shows.html
">http://www.redbankgreen.com/20...6/red-bank-shows.html
</a>www.flickr.com/groups/redbankferrariday2008
 
C

chuckstyl5

New member
+1 for NTAFUND.ORG .. They rock I have a fund there for my transplant with over $25,000+ its been there for about 3 years and we are constantly doing fundraisers for it - Whether its a large one or just coin boxes at local deli's, gas stations, etc it all helps!!!

Here is what my company did for me
<a target=_blank class=ftalternatingbarlinklarge href="http://www.redbankgreen.com/2008/06/red-bank-shows.html
">http://www.redbankgreen.com/20...6/red-bank-shows.html
</a>www.flickr.com/groups/redbankferrariday2008
 
C

chuckstyl5

New member
+1 for NTAFUND.ORG .. They rock I have a fund there for my transplant with over $25,000+ its been there for about 3 years and we are constantly doing fundraisers for it - Whether its a large one or just coin boxes at local deli's, gas stations, etc it all helps!!!
<br />
<br />Here is what my company did for me
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.redbankgreen.com/2008/06/red-bank-shows.html
">http://www.redbankgreen.com/20...6/red-bank-shows.html
</a><br />www.flickr.com/groups/redbankferrariday2008
 
T

theLostMiler

New member
Thanks Chuck, I understand that site a bit more. It looks like you can use the money towards living expenses if having to move for transplant, which I will have to. And its not counted as income so thats what I want as well. This looks very promising.

Is the 4% of check and cash turn out to be a lot?
 
T

theLostMiler

New member
Thanks Chuck, I understand that site a bit more. It looks like you can use the money towards living expenses if having to move for transplant, which I will have to. And its not counted as income so thats what I want as well. This looks very promising.

Is the 4% of check and cash turn out to be a lot?
 
T

theLostMiler

New member
Thanks Chuck, I understand that site a bit more. It looks like you can use the money towards living expenses if having to move for transplant, which I will have to. And its not counted as income so thats what I want as well. This looks very promising.
<br />
<br />Is the 4% of check and cash turn out to be a lot?
 
C

chuckstyl5

New member
the 4% you dont really notice - if someone deposits $100 you get $96 thats not too bad for having an account and not really having to do anything - They reimburse you super fast if you need it or you mail in your bills and they pay directly - Super helpful with fundraisers and all donations are tax exemptions for the donators which is awesome.
 
C

chuckstyl5

New member
the 4% you dont really notice - if someone deposits $100 you get $96 thats not too bad for having an account and not really having to do anything - They reimburse you super fast if you need it or you mail in your bills and they pay directly - Super helpful with fundraisers and all donations are tax exemptions for the donators which is awesome.
 
C

chuckstyl5

New member
the 4% you dont really notice - if someone deposits $100 you get $96 thats not too bad for having an account and not really having to do anything - They reimburse you super fast if you need it or you mail in your bills and they pay directly - Super helpful with fundraisers and all donations are tax exemptions for the donators which is awesome.
 
T

theLostMiler

New member
Thanks for answering Chuck <img src="i/expressions/face-icon-small-smile.gif" border="0">

How about anyone know if you can open a "temporary" type account and/or trust until everything is worked out?

The fundraiser my mom is doing is well on its way and already raising money, but we havent decided how we are going to go about it?

Any legal problems with that that anyone knows of (ahem, Julie lol)
 
T

theLostMiler

New member
Thanks for answering Chuck <img src="i/expressions/face-icon-small-smile.gif" border="0">

How about anyone know if you can open a "temporary" type account and/or trust until everything is worked out?

The fundraiser my mom is doing is well on its way and already raising money, but we havent decided how we are going to go about it?

Any legal problems with that that anyone knows of (ahem, Julie lol)
 
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