My son who has (2 years old) CF is technically disabled. We submitted all the paper work to do this. According to Georgia Department of Family Services he can not show any type of income. If so, he will be booted out of the program. I'm attempting to save for his college. I'm just wondering if any one else has done the same or has gone through the same thing. I want to know the best way of doing this, if I can. I also understand since he is disabled he will not have any problem getting in to any college or having to pay for college. ????? Can someone shed some light on this for me?
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Saving for Colleage Disabled (SSI)
- Thread starter Rodney
- Start date
Rodney,
I am all for working around the system, not working with it as it doesn't work with most working class families... so here's what I would recommend.
If you put the money for college in you or your wife's name (if you are married) that will kick him off of the program too. Are there grandparents, siblings of yours or anybody else you trust willing to open an account in your sons name (with you putting money into it) and sign an affidavit or contract stating the purpose of the money in the bank account is for your sons future education and is not to be used for any other reason... blah blah all that legal jargon so you are covered if anybody ever tries to claim the money for themselves. You should also be the one making ALL the deposits and keeping ALL the reciepts, JUST IN CASE. You should do one of those college savings accounts, unless they request a childs name and SSN-because that will take you back to square one. If the only way to do a college savings account is that you have to have a SSN of the child, run the other way. I would recommend at that point that you just open a savings account (it won't give you the tax break, but it's better than loosing his SSI).
As far as not having a problem getting into any college or paying for college, not so sure that one is true. All colleges have standards of who they admit (I believe it is a bit different for a community college, there rules aren't as tough) based on a number of criteria but also on grades. If your son doens't "meet" those standards, they have every right to turn him away without fearing a discrimination case. Does that make sense? There are grants that will help him pay for college but if he is under 25 and not married, they go off the parents income to determine his Expected Family Contribution so if you are making a lot, he will get very little assistance. I would recommend you see if Georgia has a website for their department of higher education (sometimes it's called different things) and see what types of grants and scholarships the offer for students. You are about 17 years away though so a lot could change...
Good luck
I am all for working around the system, not working with it as it doesn't work with most working class families... so here's what I would recommend.
If you put the money for college in you or your wife's name (if you are married) that will kick him off of the program too. Are there grandparents, siblings of yours or anybody else you trust willing to open an account in your sons name (with you putting money into it) and sign an affidavit or contract stating the purpose of the money in the bank account is for your sons future education and is not to be used for any other reason... blah blah all that legal jargon so you are covered if anybody ever tries to claim the money for themselves. You should also be the one making ALL the deposits and keeping ALL the reciepts, JUST IN CASE. You should do one of those college savings accounts, unless they request a childs name and SSN-because that will take you back to square one. If the only way to do a college savings account is that you have to have a SSN of the child, run the other way. I would recommend at that point that you just open a savings account (it won't give you the tax break, but it's better than loosing his SSI).
As far as not having a problem getting into any college or paying for college, not so sure that one is true. All colleges have standards of who they admit (I believe it is a bit different for a community college, there rules aren't as tough) based on a number of criteria but also on grades. If your son doens't "meet" those standards, they have every right to turn him away without fearing a discrimination case. Does that make sense? There are grants that will help him pay for college but if he is under 25 and not married, they go off the parents income to determine his Expected Family Contribution so if you are making a lot, he will get very little assistance. I would recommend you see if Georgia has a website for their department of higher education (sometimes it's called different things) and see what types of grants and scholarships the offer for students. You are about 17 years away though so a lot could change...
Good luck
I am not meaning to be condescending in any way or fashion, but is this the norm, for CF parents to get their children labeled as disabled to get assistance? Also, will the state follow up in a few years to see if there is significant improvement with your son?
I think when I was a child, my parents got help from the state paying for medical expenses and meds, probably based on their income, but I don't remember them getting any 'income' on my behalf, but then again, maybe they did and didn't think it was any of my business to know that. And I think the state ran program was for Crippled Children, so in essence, I guess I was 'disabled' too but never saw it that way until I read this post.
Just wondering how things work these days.
Always curious
I think when I was a child, my parents got help from the state paying for medical expenses and meds, probably based on their income, but I don't remember them getting any 'income' on my behalf, but then again, maybe they did and didn't think it was any of my business to know that. And I think the state ran program was for Crippled Children, so in essence, I guess I was 'disabled' too but never saw it that way until I read this post.
Just wondering how things work these days.
Always curious
Sometimes nowdays, the only way to get "crippled" type insurance (medicaid) is if you are recieving SSI/SSDI. SSDI is for someone over the age of 18 who has "work history", SSI is base off of income of everyone living in the household, so if you have a minor child-the assistance would be based off of the income of the parents. So, it seems very similar to what you mentioned about when you were younger. And if a person recieves SSI, or even SSDI they can work. with SSDI, you go into a 9 month trial working program where you work and recieve SSDI (up to a certain amount based on your work $$$$$) if you feel you are ready to go back to work. With SSI, it helps pay for expenses (based on the parents income) until the child moves out of the house. Does that help it all make more sense???
That does help. So they are probably getting a SSI type thing, not SSDI?
I hadn't heard of children getting disability & it's not any of my business whatsoever, but I was concerned that if this child was considered 'disabled' then could he/she risk loosing the disability if they chose to play sports, etc. and I know that as a child, I loved playing sports, etc and would have hated to sit out of PE class or not get to play basketball because I was 'disabled'.
Thanks for the clarification <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hadn't heard of children getting disability & it's not any of my business whatsoever, but I was concerned that if this child was considered 'disabled' then could he/she risk loosing the disability if they chose to play sports, etc. and I know that as a child, I loved playing sports, etc and would have hated to sit out of PE class or not get to play basketball because I was 'disabled'.
Thanks for the clarification <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, it this situation, the initial poster's child would be recieving SSI. As far as I hear (but don't know firsthand) they do follow ups of SSI (and SSDI) recipients but elgiblity for SSI/SSDI are the same, their are impairment listings for children and impariment listings for adults (they are very similar, but ovbiously the childrens listings are lower in weight/height and so on). There are 4 specific ways a child can qualify for SSI, some of which might limit their activities (low PFT's and such) but overall, most children will meet or equal 1 of the SSA impairment listings and still be able to do normal child activities, sports, running, swimming, bike riding, playing with friends. The easiest SSA impariment listing to meet (especially as the child ages) is 1 lung infection every 6 months that requires nebulized antimicrobial medications (Tobi or colistin). Many CFers have lung infections more frequent than every 6 months, and are still very able to do normal activities.
It seems your concern/curiosity was that this child (or others) would be deprived of activities because they were recieving SSI???? Unless of course the child is VERY ill and really can't participate because of their health, they are "allowed" to carry out all normal childhood activities regardless of their SSI elgibility.
Hope that makes a bit more sense and helps you understand. And I can't speak for the inital poster, but I took no offense to your questions, it just seems that you were interested in some clairification and didn't understand how the "system" works so you just wanted some answers... hope I helped!
It seems your concern/curiosity was that this child (or others) would be deprived of activities because they were recieving SSI???? Unless of course the child is VERY ill and really can't participate because of their health, they are "allowed" to carry out all normal childhood activities regardless of their SSI elgibility.
Hope that makes a bit more sense and helps you understand. And I can't speak for the inital poster, but I took no offense to your questions, it just seems that you were interested in some clairification and didn't understand how the "system" works so you just wanted some answers... hope I helped!
CFHockeyMom
New member
Not sure if you have any other kids or not but our attorney advised us to save for both under our non-CFers namel.
Julie
You hit the nail on the head. I was concerned, again it's none of my business, but I was concerned that if this little guy was considered 'disabled' that he would always have to look over his shoulder to make sure that no one from SSI saw him playing on the football team for fear that his disability benefits may be taken away. And I hate to see any child limited on what they want to and are able to achieve because of some government agency.
I'm glad you clarified this for me. It makes sense now <img src="i/expressions/light.gif" border="0">
Thanks
Always Curious
You hit the nail on the head. I was concerned, again it's none of my business, but I was concerned that if this little guy was considered 'disabled' that he would always have to look over his shoulder to make sure that no one from SSI saw him playing on the football team for fear that his disability benefits may be taken away. And I hate to see any child limited on what they want to and are able to achieve because of some government agency.
I'm glad you clarified this for me. It makes sense now <img src="i/expressions/light.gif" border="0">
Thanks
Always Curious
Ask your lawyer or financial advisor about an education trust. In fact, it is probably worthwhile to spend a few bucks and consult a professional who has some experience in this area. It could save you alot of money down the road and they have lots of ideas and knowledge in this field.
Okay I just went through all of this with my transplant. My dad had saved basically my whole four years of college for me and put it in my name and his name. When it came time for transplant, they looked at that money as money that I had to pay for parts of the transplant and we got very minimal help paying for anything and it was also difficult getting me medicare. Thank god I was on my Dad's insurance. What my dad said he should have done was save for college but put it in his name. Once your child is 18 he is legally on his own. He will show no income and no savings. You can pay for college out of the fund that you have saved for him but he will show no income and therefore will receive aid from the state. I hope I explained this right. If you have any questions write back.
Margaret
Double lung 11.11.04
Margaret
Double lung 11.11.04
We are just about to start something for our son (14months). We have a non/cf daughter (5) and started a 529 plan (state of OH) for her. I wondered if I should do something different for our cfer because I wanted it to be flexible should he decide to not go to school and travel or need it for meds ect. It sounds like I should consider talking to someone from what you have said? Does a 529 plan in his name pose the same problems even though they are only to be used for education? Can they consider this income and deny him benefits or medicare should he need it oncehe is 18?
Sorry I'm a bit confused.
Jody
Sorry I'm a bit confused.
Jody
If your CFer would ever medically qualify for SSI (either now or down the road) and he is showing over an X amount of $$ in the bank (not exactly sure what that number is but I will look into it) it will disqualify him from recieving monthly SSI income. This is the same if the parents have over X amount of $$$ in the bank and there is a minor child recieving the SSI payment. SSI benefits go off the total income and assets of EVERYONE in the household (this includes any grandparents living with you, parent, siblings...) so it really doesn't matter if you are saving in your childrens name or in your name as their parent it can and will make them inelgible for SSI.
I think that it the concern for this particular poster, how to keep their benefits for SSI for their child right now but still have a savings set aside for college. There are ways around it but they aren't particularly "legal"....
I think that it the concern for this particular poster, how to keep their benefits for SSI for their child right now but still have a savings set aside for college. There are ways around it but they aren't particularly "legal"....