When my first daughter was diagnosed at 2 1/2 she was very, very sick. She had been hospitalized several times and had been misdiagnosed, therefore wasn't getting any better. When she was finally diagnosed, I applied for SSI for her and immediately got approved. I couldn't work because she was too sick. But as she finally started getting treated her health improved dramatically. By the time she was 5 they decided she was no longer eligible because she was too healthy so they took it away from her. I appealed and appealed it and even went before a judge but they woudn't budge. I was terrified because it meant losing her medicaid. I told them that was the reason she was so healthy and if they took her insurance she would suffer drastically.... but it did no good. I think they are very backwards in their way of thinking, but there doesn't seem to be a whole lot you can do about it.
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social security disability question
- Thread starter littledebbie
- Start date
thefrogprincess
New member
When I was a kid my mom had to go through tons of appeals before finally getting our SSI. What worked in our favor was that we lived in a very rural area and it was a 3 hour drive to our CF center. We had to have a car in good condition at all times to make it there at the drop of a hat if need be. Also there was really no one around who my parents felt comfortable leaving us with. They didn't want us at daycare because of all the stuff we'd be exposed to. One of my parents absolutely had to be home at all times.
thefrogprincess
New member
When I was a kid my mom had to go through tons of appeals before finally getting our SSI. What worked in our favor was that we lived in a very rural area and it was a 3 hour drive to our CF center. We had to have a car in good condition at all times to make it there at the drop of a hat if need be. Also there was really no one around who my parents felt comfortable leaving us with. They didn't want us at daycare because of all the stuff we'd be exposed to. One of my parents absolutely had to be home at all times.
thefrogprincess
New member
When I was a kid my mom had to go through tons of appeals before finally getting our SSI. What worked in our favor was that we lived in a very rural area and it was a 3 hour drive to our CF center. We had to have a car in good condition at all times to make it there at the drop of a hat if need be. Also there was really no one around who my parents felt comfortable leaving us with. They didn't want us at daycare because of all the stuff we'd be exposed to. One of my parents absolutely had to be home at all times.
I'm in a rush tonight, so this may have already been covered but the SSI is basically suppose to be set into an account for the kids needs. Special treatment, expenses to appointments, and also for the parents in a round-about way who have to take the extensive time off of work to care for a "disabled"/sick child.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
I'm in a rush tonight, so this may have already been covered but the SSI is basically suppose to be set into an account for the kids needs. Special treatment, expenses to appointments, and also for the parents in a round-about way who have to take the extensive time off of work to care for a "disabled"/sick child.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
I'm in a rush tonight, so this may have already been covered but the SSI is basically suppose to be set into an account for the kids needs. Special treatment, expenses to appointments, and also for the parents in a round-about way who have to take the extensive time off of work to care for a "disabled"/sick child.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
There is no "work" criteria with SSI/SSDI for kids, but rather impairment listings (similiar to the adult ones for the specific disease/condition) that the kids DO have to meet or equal, just hte same as an adult would have to meet or equal.
Here's how it works in the UK, I know its not relevant to a lot here, but I suppose it can give you a comparison.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
Here's how it works in the UK, I know its not relevant to a lot here, but I suppose it can give you a comparison.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
Here's how it works in the UK, I know its not relevant to a lot here, but I suppose it can give you a comparison.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
DLA- disabled living allowance, is paid out in 3 bands, roughly £20, £40 and £60 ( $40, $80 and $120) weekly. You have to apply filling out a rather long and somewhat complicated form, our sons is due for renewal this August. In the form you outline medication, treatments and so on, we have to expand it a bit, basically everything that can happen, happens on a daily basis. You cant lie on the form so to speak, maybe an exaggeration, but still the truth. We were lucky enough to get the top rate for Craig.
We also get Tax Credits, and because Craig is on the top rate of DLA, we get extra Tax Credits, for us it works out to £490 a month.
Also Liz gets carers allowance at £46 a week, she dropped her hours at work when Craig was born, she only does 8 hours a week.
Also you get child benefit in the UK, dont know if you get this in the USA, it is going up to £20 for the first child, and £15 for subsequent kids, and thats weekly. Everybody gets this regardless of income.
I dont expect that Craig will remain on the top rate this year, in which case we will loose out a bit of money.
So in all, we get over £1000 in benefits monthly. ($2000)
I guess the DLA covers your extra costs that you may incur like travel to clinics, eqipment and so on.
Lynda, thanks for the link, it has a lot of great info. I applied for SSI several years ago for my daughter on her mental health issues, but we did not have a cf diagnosis then. We were denied at that time because we made too much money. Since then she has been diagnosed with cf and I have quit working and am now a full time college student. We have 3 children in all and with one income we struggle with money daily. We are going to reapply again with the changes and see what comes of it. A child can be disabled and still receive a denial, example: a friend of mine and his wife have a baby (now 3) that was born with mitochondrial disease. He is pretty much a vegetable and was not even supposed to live a year. They have applied several times, but because they both work they were told their income level was too high for this child to receive benefits. This child cannot walk, talk eat, and will never be able to do anything. Here's the real kicker, if he becomes and adult he can reapply, but if he is living with his parents their income will still be considered. The only way he can get benefits as an adult is if they put him in a nursing home!!!! That is messed up. A person who is totally incapacitated should get benefits regardless of the family income level. This whole system is so frustrating, but I guess it has to be to weed out those who try to take advantage. Best of luck to all who are trying to support their sick kids.
Lynda, thanks for the link, it has a lot of great info. I applied for SSI several years ago for my daughter on her mental health issues, but we did not have a cf diagnosis then. We were denied at that time because we made too much money. Since then she has been diagnosed with cf and I have quit working and am now a full time college student. We have 3 children in all and with one income we struggle with money daily. We are going to reapply again with the changes and see what comes of it. A child can be disabled and still receive a denial, example: a friend of mine and his wife have a baby (now 3) that was born with mitochondrial disease. He is pretty much a vegetable and was not even supposed to live a year. They have applied several times, but because they both work they were told their income level was too high for this child to receive benefits. This child cannot walk, talk eat, and will never be able to do anything. Here's the real kicker, if he becomes and adult he can reapply, but if he is living with his parents their income will still be considered. The only way he can get benefits as an adult is if they put him in a nursing home!!!! That is messed up. A person who is totally incapacitated should get benefits regardless of the family income level. This whole system is so frustrating, but I guess it has to be to weed out those who try to take advantage. Best of luck to all who are trying to support their sick kids.
Lynda, thanks for the link, it has a lot of great info. I applied for SSI several years ago for my daughter on her mental health issues, but we did not have a cf diagnosis then. We were denied at that time because we made too much money. Since then she has been diagnosed with cf and I have quit working and am now a full time college student. We have 3 children in all and with one income we struggle with money daily. We are going to reapply again with the changes and see what comes of it. A child can be disabled and still receive a denial, example: a friend of mine and his wife have a baby (now 3) that was born with mitochondrial disease. He is pretty much a vegetable and was not even supposed to live a year. They have applied several times, but because they both work they were told their income level was too high for this child to receive benefits. This child cannot walk, talk eat, and will never be able to do anything. Here's the real kicker, if he becomes and adult he can reapply, but if he is living with his parents their income will still be considered. The only way he can get benefits as an adult is if they put him in a nursing home!!!! That is messed up. A person who is totally incapacitated should get benefits regardless of the family income level. This whole system is so frustrating, but I guess it has to be to weed out those who try to take advantage. Best of luck to all who are trying to support their sick kids.