SSDI and drug studies

triples15 · Sep 30, 2009

I was recently approved for Social Security Disability (thanks to julie's help). I did not qualify for SSI because my husband makes too much money, so I'm only on SSDI.

I vaguely remember reading something about people on SSI not being able to participate in research studies. I think it has more to do with not being able to be paid for the study, rather than actually being in the study, since SSI is based on income. I'm wondering if any of you know if there are any rules about being on SSDI and participating in a study? I did a search and couldn't find anything here on cf.com. I also searched Social Security's website and couldn't find anything about it. I can't remember where I read that to save my life!

I don't think there are any rules against it, but I just started a research study (mannitol) and then had a mini panic attack when I remembered hearing something about people not being able to participate in research when receiving Social Security benefits.

Thanks in advance for any insight!!

triples15 · Sep 30, 2009

I was recently approved for Social Security Disability (thanks to julie's help). I did not qualify for SSI because my husband makes too much money, so I'm only on SSDI.

I vaguely remember reading something about people on SSI not being able to participate in research studies. I think it has more to do with not being able to be paid for the study, rather than actually being in the study, since SSI is based on income. I'm wondering if any of you know if there are any rules about being on SSDI and participating in a study? I did a search and couldn't find anything here on cf.com. I also searched Social Security's website and couldn't find anything about it. I can't remember where I read that to save my life!

I don't think there are any rules against it, but I just started a research study (mannitol) and then had a mini panic attack when I remembered hearing something about people not being able to participate in research when receiving Social Security benefits.

Thanks in advance for any insight!!

triples15 · Sep 30, 2009

I was recently approved for Social Security Disability (thanks to julie's help). I did not qualify for SSI because my husband makes too much money, so I'm only on SSDI.

I vaguely remember reading something about people on SSI not being able to participate in research studies. I think it has more to do with not being able to be paid for the study, rather than actually being in the study, since SSI is based on income. I'm wondering if any of you know if there are any rules about being on SSDI and participating in a study? I did a search and couldn't find anything here on cf.com. I also searched Social Security's website and couldn't find anything about it. I can't remember where I read that to save my life!

I don't think there are any rules against it, but I just started a research study (mannitol) and then had a mini panic attack when I remembered hearing something about people not being able to participate in research when receiving Social Security benefits.

Thanks in advance for any insight!!

triples15 · Sep 30, 2009

I was recently approved for Social Security Disability (thanks to julie's help). I did not qualify for SSI because my husband makes too much money, so I'm only on SSDI.

I vaguely remember reading something about people on SSI not being able to participate in research studies. I think it has more to do with not being able to be paid for the study, rather than actually being in the study, since SSI is based on income. I'm wondering if any of you know if there are any rules about being on SSDI and participating in a study? I did a search and couldn't find anything here on cf.com. I also searched Social Security's website and couldn't find anything about it. I can't remember where I read that to save my life!

I don't think there are any rules against it, but I just started a research study (mannitol) and then had a mini panic attack when I remembered hearing something about people not being able to participate in research when receiving Social Security benefits.

Thanks in advance for any insight!!

triples15 · Sep 30, 2009

I was recently approved for Social Security Disability (thanks to julie's help). I did not qualify for SSI because my husband makes too much money, so I'm only on SSDI.
 
 I vaguely remember reading something about people on SSI not being able to participate in research studies. I think it has more to do with not being able to be paid for the study, rather than actually being in the study, since SSI is based on income. I'm wondering if any of you know if there are any rules about being on SSDI and participating in a study? I did a search and couldn't find anything here on cf.com. I also searched Social Security's website and couldn't find anything about it. I can't remember where I read that to save my life!
 
 I don't think there are any rules against it, but I just started a research study (mannitol) and then had a mini panic attack when I remembered hearing something about people not being able to participate in research when receiving Social Security benefits.
 
 Thanks in advance for any insight!!

JazzysMom · Sep 30, 2009

Any compensation for trials, studies etc is considered income.

When on SSI (which is income based) you must declare it or risk losing benefits. The word you heard is Congress trying to pass legislation allowing those on SSI to particpate, get compensated without it affecting their benefits or eligibility.

People on SSDI arent usually affected since that is work history based & you are allowed a certain amount of income.

JazzysMom · Sep 30, 2009

Any compensation for trials, studies etc is considered income.

When on SSI (which is income based) you must declare it or risk losing benefits. The word you heard is Congress trying to pass legislation allowing those on SSI to particpate, get compensated without it affecting their benefits or eligibility.

People on SSDI arent usually affected since that is work history based & you are allowed a certain amount of income.

JazzysMom · Sep 30, 2009

Any compensation for trials, studies etc is considered income.

When on SSI (which is income based) you must declare it or risk losing benefits. The word you heard is Congress trying to pass legislation allowing those on SSI to particpate, get compensated without it affecting their benefits or eligibility.

People on SSDI arent usually affected since that is work history based & you are allowed a certain amount of income.

JazzysMom · Sep 30, 2009

Any compensation for trials, studies etc is considered income.

When on SSI (which is income based) you must declare it or risk losing benefits. The word you heard is Congress trying to pass legislation allowing those on SSI to particpate, get compensated without it affecting their benefits or eligibility.

People on SSDI arent usually affected since that is work history based & you are allowed a certain amount of income.

JazzysMom · Sep 30, 2009

Any compensation for trials, studies etc is considered income.
 
 When on SSI (which is income based) you must declare it or risk losing benefits. The word you heard is Congress trying to pass legislation allowing those on SSI to particpate, get compensated without it affecting their benefits or eligibility.
 
 People on SSDI arent usually affected since that is work history based & you are allowed a certain amount of income.

musclemania70 · Sep 30, 2009

don't forget that you can use your out of pocket expenses as a spend-down and then it decreases your level of income so that hopefully you can be in the trial and earn the income.

I make more than the $900 or so in income monthly but I qualified using a 'spend-down' which means deducting my out of pocket expenses from my gross income to keep me below the threshold.

fyi

musclemania70 · Sep 30, 2009

don't forget that you can use your out of pocket expenses as a spend-down and then it decreases your level of income so that hopefully you can be in the trial and earn the income.

I make more than the $900 or so in income monthly but I qualified using a 'spend-down' which means deducting my out of pocket expenses from my gross income to keep me below the threshold.

fyi

musclemania70 · Sep 30, 2009

don't forget that you can use your out of pocket expenses as a spend-down and then it decreases your level of income so that hopefully you can be in the trial and earn the income.

I make more than the $900 or so in income monthly but I qualified using a 'spend-down' which means deducting my out of pocket expenses from my gross income to keep me below the threshold.

fyi

musclemania70 · Sep 30, 2009

don't forget that you can use your out of pocket expenses as a spend-down and then it decreases your level of income so that hopefully you can be in the trial and earn the income.

I make more than the $900 or so in income monthly but I qualified using a 'spend-down' which means deducting my out of pocket expenses from my gross income to keep me below the threshold.

fyi

musclemania70 · Sep 30, 2009

don't forget that you can use your out of pocket expenses as a spend-down and then it decreases your level of income so that hopefully you can be in the trial and earn the income.
 
 I make more than the $900 or so in income monthly but I qualified using a 'spend-down' which means deducting my out of pocket expenses from my gross income to keep me below the threshold.
 
 fyi

LouLou · Sep 30, 2009

In 2009 you can not make more than $980 / mo. and remain elgible for SSDI benefits.
Your impairment is no longer considered a disablity in the ss admin's eyes at this point. $980 is the SGA amount. Each year it may change.

Month in, month out you must make less than $700 / mo. for it not to count as one of your trial work months. (or TWP "p" is for period). If you get over the TWP amount 9 times in a 60 month rolling period then you will be reviewed to see if you can work at an SGA or higher amount. Each year the TWP amount may change.

So with regards to the clinical trial just find out if in any given month if they pay you more than $700. Only compensation should count towards this number, not reimbursement for lodging, travel or food. Make sure they pay those reimbursements out separately and it doesn't go on the end of year 1099. If there is a month that is higher than $700 you can try to do what musclemania suggests to get it lower. But if you don't get it lower it will count as one of your TWP's. It's not a show stopper just something to keep track of.

reference:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/redbook/eng/ssdi-only-employment-supports.htm
">http://www.socialsecurity.gov/...ployment-supports.htm
</a><a target=_blank class=ftalternatingbarlinklarge href="http://butyoudontlooksick.com/boards/viewtopic.php?f=32&t=19286
">http://butyoudontlooksick.com/...opic.php?f=32&t=19286
</a>

LouLou · Sep 30, 2009

In 2009 you can not make more than $980 / mo. and remain elgible for SSDI benefits.
Your impairment is no longer considered a disablity in the ss admin's eyes at this point. $980 is the SGA amount. Each year it may change.

Month in, month out you must make less than $700 / mo. for it not to count as one of your trial work months. (or TWP "p" is for period). If you get over the TWP amount 9 times in a 60 month rolling period then you will be reviewed to see if you can work at an SGA or higher amount. Each year the TWP amount may change.

So with regards to the clinical trial just find out if in any given month if they pay you more than $700. Only compensation should count towards this number, not reimbursement for lodging, travel or food. Make sure they pay those reimbursements out separately and it doesn't go on the end of year 1099. If there is a month that is higher than $700 you can try to do what musclemania suggests to get it lower. But if you don't get it lower it will count as one of your TWP's. It's not a show stopper just something to keep track of.

reference:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/redbook/eng/ssdi-only-employment-supports.htm
">http://www.socialsecurity.gov/...ployment-supports.htm
</a><a target=_blank class=ftalternatingbarlinklarge href="http://butyoudontlooksick.com/boards/viewtopic.php?f=32&t=19286
">http://butyoudontlooksick.com/...opic.php?f=32&t=19286
</a>

LouLou · Sep 30, 2009

In 2009 you can not make more than $980 / mo. and remain elgible for SSDI benefits.
Your impairment is no longer considered a disablity in the ss admin's eyes at this point. $980 is the SGA amount. Each year it may change.

Month in, month out you must make less than $700 / mo. for it not to count as one of your trial work months. (or TWP "p" is for period). If you get over the TWP amount 9 times in a 60 month rolling period then you will be reviewed to see if you can work at an SGA or higher amount. Each year the TWP amount may change.

So with regards to the clinical trial just find out if in any given month if they pay you more than $700. Only compensation should count towards this number, not reimbursement for lodging, travel or food. Make sure they pay those reimbursements out separately and it doesn't go on the end of year 1099. If there is a month that is higher than $700 you can try to do what musclemania suggests to get it lower. But if you don't get it lower it will count as one of your TWP's. It's not a show stopper just something to keep track of.

reference:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/redbook/eng/ssdi-only-employment-supports.htm
">http://www.socialsecurity.gov/...ployment-supports.htm
</a><a target=_blank class=ftalternatingbarlinklarge href="http://butyoudontlooksick.com/boards/viewtopic.php?f=32&t=19286
">http://butyoudontlooksick.com/...opic.php?f=32&t=19286
</a>

LouLou · Sep 30, 2009

In 2009 you can not make more than $980 / mo. and remain elgible for SSDI benefits.
Your impairment is no longer considered a disablity in the ss admin's eyes at this point. $980 is the SGA amount. Each year it may change.

Month in, month out you must make less than $700 / mo. for it not to count as one of your trial work months. (or TWP "p" is for period). If you get over the TWP amount 9 times in a 60 month rolling period then you will be reviewed to see if you can work at an SGA or higher amount. Each year the TWP amount may change.

So with regards to the clinical trial just find out if in any given month if they pay you more than $700. Only compensation should count towards this number, not reimbursement for lodging, travel or food. Make sure they pay those reimbursements out separately and it doesn't go on the end of year 1099. If there is a month that is higher than $700 you can try to do what musclemania suggests to get it lower. But if you don't get it lower it will count as one of your TWP's. It's not a show stopper just something to keep track of.

reference:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/redbook/eng/ssdi-only-employment-supports.htm
">http://www.socialsecurity.gov/...ployment-supports.htm
</a><a target=_blank class=ftalternatingbarlinklarge href="http://butyoudontlooksick.com/boards/viewtopic.php?f=32&t=19286
">http://butyoudontlooksick.com/...opic.php?f=32&t=19286
</a>

LouLou · Sep 30, 2009

In 2009 you can not make more than $980 / mo. and remain elgible for SSDI benefits.
 Your impairment is no longer considered a disablity in the ss admin's eyes at this point. $980 is the SGA amount. Each year it may change.
 
 Month in, month out you must make less than $700 / mo. for it not to count as one of your trial work months. (or TWP "p" is for period). If you get over the TWP amount 9 times in a 60 month rolling period then you will be reviewed to see if you can work at an SGA or higher amount. Each year the TWP amount may change.
 
 So with regards to the clinical trial just find out if in any given month if they pay you more than $700. Only compensation should count towards this number, not reimbursement for lodging, travel or food. Make sure they pay those reimbursements out separately and it doesn't go on the end of year 1099. If there is a month that is higher than $700 you can try to do what musclemania suggests to get it lower. But if you don't get it lower it will count as one of your TWP's. It's not a show stopper just something to keep track of.
 
 reference:
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/redbook/eng/ssdi-only-employment-supports.htm
">http://www.socialsecurity.gov/...ployment-supports.htm
</a> <a target=_blank class=ftalternatingbarlinklarge href="http://butyoudontlooksick.com/boards/viewtopic.php?f=32&t=19286
">http://butyoudontlooksick.com/...opic.php?f=32&t=19286
</a>

SSDI and drug studies

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