SSI and Special Needs Trust

johanna297

New member
Hi, I am a 25 year old woman with CF. I just got my Bachelor's degree at the end of January and I'm trying to figure out how I'm going to take care of myself financially. I know that I do not have the stamina or high enough lung function to work full time and still take care of myself. I'm still on my dad's insurance and we're going to try and get me declared a disabled child so I can stay on it and not pay COBRA. I also just got a part time job that should be 20 hours a week at $8/hour. I know that will not be enough money to pay for rent, food, and medical costs, so I'm considering trying to get government benefits. Here's where I hit trouble:
I don't have enough work credit to qualify for SSDI. A lawyer that I've been talking to thinks that I probably have low enough lung function to qualify for SSI, but I have to have less that $2000 in assets to qualify. I currently have about $9500 in stock that my grandfather left me.
I'm not sure what to do. One option is to sell the stock and put the money in a special needs trust, but I have no experience with that and I'm worried that I'll have trouble accessing the money if I really need it. The other option is to sell the stock and live off of that until I have $2000 and then apply for SSI.
However, if I do that, then it'll be years before I can get on Medicare. I know that I can get on Medicare if I'm on SSI for about 29 months, so the longer I put off geting SSI, the longer I put off Medicare. My dad may not want to keep paying for me on his health insurance, so I need another option.
Basically, I'm just really confused and don't know what to do. I'm worried about getting on SSI and then still not having enough money, or being penalized for working, but I'm also worried that I can't work enough to pay all my bills.
Any advice would be highly appreciated.
 

johanna297

New member
Hi, I am a 25 year old woman with CF. I just got my Bachelor's degree at the end of January and I'm trying to figure out how I'm going to take care of myself financially. I know that I do not have the stamina or high enough lung function to work full time and still take care of myself. I'm still on my dad's insurance and we're going to try and get me declared a disabled child so I can stay on it and not pay COBRA. I also just got a part time job that should be 20 hours a week at $8/hour. I know that will not be enough money to pay for rent, food, and medical costs, so I'm considering trying to get government benefits. Here's where I hit trouble:
I don't have enough work credit to qualify for SSDI. A lawyer that I've been talking to thinks that I probably have low enough lung function to qualify for SSI, but I have to have less that $2000 in assets to qualify. I currently have about $9500 in stock that my grandfather left me.
I'm not sure what to do. One option is to sell the stock and put the money in a special needs trust, but I have no experience with that and I'm worried that I'll have trouble accessing the money if I really need it. The other option is to sell the stock and live off of that until I have $2000 and then apply for SSI.
However, if I do that, then it'll be years before I can get on Medicare. I know that I can get on Medicare if I'm on SSI for about 29 months, so the longer I put off geting SSI, the longer I put off Medicare. My dad may not want to keep paying for me on his health insurance, so I need another option.
Basically, I'm just really confused and don't know what to do. I'm worried about getting on SSI and then still not having enough money, or being penalized for working, but I'm also worried that I can't work enough to pay all my bills.
Any advice would be highly appreciated.
 

stillkickin

New member
You can write to Beth Sufian. She is an attorney who writes articles for CF Roundtable...cfroundtable.com. You can see a sample of her topics there. She deals with CF related issues with SSDI, SSI, etc. She's a kind and bright lady...who I believe has CF...so she's been around the block and can help. Health insurance when you're chronically ill is a stressful and major thing. You're a bright young lady for thinking about this now and trying to understand the steps you can take to get something in place. Beth can help you further. Don't be afraid to get into contact with her.
 

stillkickin

New member
You can write to Beth Sufian. She is an attorney who writes articles for CF Roundtable...cfroundtable.com. You can see a sample of her topics there. She deals with CF related issues with SSDI, SSI, etc. She's a kind and bright lady...who I believe has CF...so she's been around the block and can help. Health insurance when you're chronically ill is a stressful and major thing. You're a bright young lady for thinking about this now and trying to understand the steps you can take to get something in place. Beth can help you further. Don't be afraid to get into contact with her.
 
K

katethekid

Guest
If you can prove you were disabled before age 21, then you can draw off your mom or dad's social security... My Dad is deceased and I'm trying to get this type of disability right now... Basically you are claiming to be a disabled adult child... Hope this helps some.
 
K

katethekid

Guest
If you can prove you were disabled before age 21, then you can draw off your mom or dad's social security... My Dad is deceased and I'm trying to get this type of disability right now... Basically you are claiming to be a disabled adult child... Hope this helps some.
 

rmotion

New member
I would try to work a few years and earn enough credits to get ssdi.
I learned that the hard way.
You need 4 units x 5 years or so , per year of income and each unit is about $1100 in income. NOt sure how that will play out. Please double check with SS and Beth at the CFF
It is best to plan a little then stick your head in the sand. Which admittedly is more peaceful less noise.
 

rmotion

New member
I would try to work a few years and earn enough credits to get ssdi.
I learned that the hard way.
You need 4 units x 5 years or so , per year of income and each unit is about $1100 in income. NOt sure how that will play out. Please double check with SS and Beth at the CFF
It is best to plan a little then stick your head in the sand. Which admittedly is more peaceful less noise.
 

rmotion

New member
ssi is usually so low it is crazy and you have to be basically destitute.
Do you have any work credits for the last few years?
You can find out and might be in ok shape for ssdi or at least in a few years.
If you have a job then you pay disability and ss tax into ssdi and would be a better option down the road.
you could also set up as self employed and pay self employment tax(which is more).
YOu could possibly use that money to start a business and be the employee.
You can figure out ssdi is between $500 and $2000 (some get more but it is based on high income).
Can you figure out how to make $1000 per month in a business and maybe work parttime.

feel free to email me I am good at figuring out business ideas
 

rmotion

New member
ssi is usually so low it is crazy and you have to be basically destitute.
Do you have any work credits for the last few years?
You can find out and might be in ok shape for ssdi or at least in a few years.
If you have a job then you pay disability and ss tax into ssdi and would be a better option down the road.
you could also set up as self employed and pay self employment tax(which is more).
YOu could possibly use that money to start a business and be the employee.
You can figure out ssdi is between $500 and $2000 (some get more but it is based on high income).
Can you figure out how to make $1000 per month in a business and maybe work parttime.

feel free to email me I am good at figuring out business ideas
 

static

New member
Since you have a Bachelor's might as well put it to good use before you go on SSI if you can help it. I agree with Rmotion, SSI income is considerably lower than most jobs out there, especially with your degree. We kind of get the short end the straw being broke and sick lol.

After I got denied for both SSI and SSDI (I didn't have a lawyer) I decied to go to work part-time and still make more money than I would if I was getting disability benefits.
 

static

New member
Since you have a Bachelor's might as well put it to good use before you go on SSI if you can help it. I agree with Rmotion, SSI income is considerably lower than most jobs out there, especially with your degree. We kind of get the short end the straw being broke and sick lol.

After I got denied for both SSI and SSDI (I didn't have a lawyer) I decied to go to work part-time and still make more money than I would if I was getting disability benefits.
 
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