Assistance Programs

[mom2caseyafrica]

I applied for SSI for my daughter because several social workers told me I should. She was denied and the SSA gave me the specifics on who qualifies and why my daughter does not. Several people have told me I should make an appeal, and/or hire a lawyer to help me make an appeal. I have also been advised to look for other programs that assist families with special needs. I hate to seem like I just want to live off of other peoples charity. I dont. I just need a little bit of good luck somewhere in life. I need to find some way to survive. That SSI money was going to help us survive until I could get a degree and find a good job in genetic researching. Then that money was going to be for my daughter. I had a friend once who fought to get SSI for her son who has autism. It took 2 years. She told me that the money from SSI was for him to use toward a hobby he enjoyed. That money was to compensate for all the things he would never get to do because of his disorder. That is what I wanted that money to be for my daughter. A survival tool for the time being. But also an outlet for her later in life when she discovers her own preferences. Maybe she will want to take ballet or play soccer. I want her to be able to do those things, to live life and achieve the goals she sets for herself. But how will she ever do those things if we dont even have a place to call home. I hate the fact that i dont know where we will be next month, and that we dont know when we will get to see her daddy again if we have to leave. He is so afraid that she will forget him and so am I. And I hate that all my friends and family have to say is life is hard. I guess this is my big lesson in "Everyone is out to take care of themselves" Ijust want to give her a home with her mommy and daddy so she can at least pretend to have a normal life.
Sorry for all the venting. For anyone that has continued to read this I guess my question is do you know of any programs beside SSI that could help us out?

 

[mom2caseyafrica]

I applied for SSI for my daughter because several social workers told me I should. She was denied and the SSA gave me the specifics on who qualifies and why my daughter does not. Several people have told me I should make an appeal, and/or hire a lawyer to help me make an appeal. I have also been advised to look for other programs that assist families with special needs. I hate to seem like I just want to live off of other peoples charity. I dont. I just need a little bit of good luck somewhere in life. I need to find some way to survive. That SSI money was going to help us survive until I could get a degree and find a good job in genetic researching. Then that money was going to be for my daughter. I had a friend once who fought to get SSI for her son who has autism. It took 2 years. She told me that the money from SSI was for him to use toward a hobby he enjoyed. That money was to compensate for all the things he would never get to do because of his disorder. That is what I wanted that money to be for my daughter. A survival tool for the time being. But also an outlet for her later in life when she discovers her own preferences. Maybe she will want to take ballet or play soccer. I want her to be able to do those things, to live life and achieve the goals she sets for herself. But how will she ever do those things if we dont even have a place to call home. I hate the fact that i dont know where we will be next month, and that we dont know when we will get to see her daddy again if we have to leave. He is so afraid that she will forget him and so am I. And I hate that all my friends and family have to say is life is hard. I guess this is my big lesson in "Everyone is out to take care of themselves" Ijust want to give her a home with her mommy and daddy so she can at least pretend to have a normal life.
Sorry for all the venting. For anyone that has continued to read this I guess my question is do you know of any programs beside SSI that could help us out?

 

[mom2caseyafrica]

I applied for SSI for my daughter because several social workers told me I should. She was denied and the SSA gave me the specifics on who qualifies and why my daughter does not. Several people have told me I should make an appeal, and/or hire a lawyer to help me make an appeal. I have also been advised to look for other programs that assist families with special needs. I hate to seem like I just want to live off of other peoples charity. I dont. I just need a little bit of good luck somewhere in life. I need to find some way to survive. That SSI money was going to help us survive until I could get a degree and find a good job in genetic researching. Then that money was going to be for my daughter. I had a friend once who fought to get SSI for her son who has autism. It took 2 years. She told me that the money from SSI was for him to use toward a hobby he enjoyed. That money was to compensate for all the things he would never get to do because of his disorder. That is what I wanted that money to be for my daughter. A survival tool for the time being. But also an outlet for her later in life when she discovers her own preferences. Maybe she will want to take ballet or play soccer. I want her to be able to do those things, to live life and achieve the goals she sets for herself. But how will she ever do those things if we dont even have a place to call home. I hate the fact that i dont know where we will be next month, and that we dont know when we will get to see her daddy again if we have to leave. He is so afraid that she will forget him and so am I. And I hate that all my friends and family have to say is life is hard. I guess this is my big lesson in "Everyone is out to take care of themselves" Ijust want to give her a home with her mommy and daddy so she can at least pretend to have a normal life.
<br />Sorry for all the venting. For anyone that has continued to read this I guess my question is do you know of any programs beside SSI that could help us out?

 

[carrierae21]

Have you applied for the patient access networks to help with copays? I know there is one for Pulmozyme and I think I've heard of one for TOBI... I know I have the info for TOBI, but I'd have to did around my e-mail for the pulmozyme one. E-mail me carrie.naff@yahoo.com and I'll forward what I have to you. I know it's not like SSI, but maybe you'll have a little extra cash if you don't have to pay for the rx's.

 

[carrierae21]

Have you applied for the patient access networks to help with copays? I know there is one for Pulmozyme and I think I've heard of one for TOBI... I know I have the info for TOBI, but I'd have to did around my e-mail for the pulmozyme one. E-mail me carrie.naff@yahoo.com and I'll forward what I have to you. I know it's not like SSI, but maybe you'll have a little extra cash if you don't have to pay for the rx's.

 

[carrierae21]

Have you applied for the patient access networks to help with copays? I know there is one for Pulmozyme and I think I've heard of one for TOBI... I know I have the info for TOBI, but I'd have to did around my e-mail for the pulmozyme one. E-mail me carrie.naff@yahoo.com and I'll forward what I have to you. I know it's not like SSI, but maybe you'll have a little extra cash if you don't have to pay for the rx's.

 

[mom2caseyafrica]

We currently Have texas medicaid which, thank god, pays for her medical needs for the time being. I am trying to find programs that may assist with housing so we dont have to move around all the time and not know where we are gonna be going.

 

[mom2caseyafrica]

We currently Have texas medicaid which, thank god, pays for her medical needs for the time being. I am trying to find programs that may assist with housing so we dont have to move around all the time and not know where we are gonna be going.

 

[mom2caseyafrica]

We currently Have texas medicaid which, thank god, pays for her medical needs for the time being. I am trying to find programs that may assist with housing so we dont have to move around all the time and not know where we are gonna be going.

 

[crickit715]

did they give you specific reasons why your child wouldnt qualify for ssi?? ....i know ssi is based on income also, so the more money you make the less ssi you get.

 

[crickit715]

did they give you specific reasons why your child wouldnt qualify for ssi?? ....i know ssi is based on income also, so the more money you make the less ssi you get.

 

[crickit715]

did they give you specific reasons why your child wouldnt qualify for ssi?? ....i know ssi is based on income also, so the more money you make the less ssi you get.

 

[mom2caseyafrica]

Yes, if you are applying for SSI for a child they have to have a medical condition that has marked and severe functional limitations, and must last, or be expected to last longer than 12 months or result in death. She CURRENTLY has no functional limitations. The only income we have is the 140 a week I make doing childcare. I know financially we must qualify, but she doesnt have functional limitations yet.

 

[mom2caseyafrica]

Yes, if you are applying for SSI for a child they have to have a medical condition that has marked and severe functional limitations, and must last, or be expected to last longer than 12 months or result in death. She CURRENTLY has no functional limitations. The only income we have is the 140 a week I make doing childcare. I know financially we must qualify, but she doesnt have functional limitations yet.

 

[mom2caseyafrica]

Yes, if you are applying for SSI for a child they have to have a medical condition that has marked and severe functional limitations, and must last, or be expected to last longer than 12 months or result in death. She CURRENTLY has no functional limitations. The only income we have is the 140 a week I make doing childcare. I know financially we must qualify, but she doesnt have functional limitations yet.

 

[Rebjane]

Some states provide Children with Special Health Needs program, It is based on income and will provide money for anything CF related not covered by health insurance ie: CF related travel, parking at the CF center, nebs, vitamins, nutritional supplements, co-pays.

What about WIC?

have you talked to your social worker at the CF clinic?

 

[Rebjane]

Some states provide Children with Special Health Needs program, It is based on income and will provide money for anything CF related not covered by health insurance ie: CF related travel, parking at the CF center, nebs, vitamins, nutritional supplements, co-pays.

What about WIC?

have you talked to your social worker at the CF clinic?

 

[Rebjane]

Some states provide Children with Special Health Needs program, It is based on income and will provide money for anything CF related not covered by health insurance ie: CF related travel, parking at the CF center, nebs, vitamins, nutritional supplements, co-pays.
<br />
<br />What about WIC?
<br />
<br />have you talked to your social worker at the CF clinic?

 

[mom2caseyafrica]

The social worker at the CF clinic wasnt very helpful in my opinion. I tried asking if attempting to get SSI was a good idea and she just blew off my question. I asked about housing assistance and she handed me a flyer for section 8. Of course all of this happened in the same day that I was told that my daughter had cf, so that was a little more than I could digest all at once. I havent really gotten a chance to speak with the social worker since then.

 

[mom2caseyafrica]

The social worker at the CF clinic wasnt very helpful in my opinion. I tried asking if attempting to get SSI was a good idea and she just blew off my question. I asked about housing assistance and she handed me a flyer for section 8. Of course all of this happened in the same day that I was told that my daughter had cf, so that was a little more than I could digest all at once. I havent really gotten a chance to speak with the social worker since then.