Is there anyone who has gone thru the hoops for getting child on disability to help with costs? Am i weong to even consider it? Bills are unbearable as all parents know. Thank you!
I’m a single mother of 2, my 12 year old son was diagnosed at 7. I’ve filed for SSI/Disability twice within the past 1.5 years and have been denied twice !! My son has been hospitalized 3x since last March with DKA. I’ve been unable to work due to all of this. If it wasn’t for my mother allowing us to move in, I’d be really lost. But that doesn’t help with a car or income. I too am wondering why Disability is available if those of us who actually NEED this, aren’t able to qualify. We live in PA and I’m going to apply in office this time…fingers are crossed !! Wishing you lots of strength through it all. -Courtney
I hear what you are saying, In 1990 the United States Congress declared that persons with TypeOne Diabetes are permanently disabled - Public Law 101-336 known as the Americans With Disabilities Act; T1D was the only disease identified by name.
If your children are being denied this benefit the administrators of SSI/Disability Administrators are acting contrary to law and I suggest that you ask the United States Attorney in your area to represent you / your children; apply through the public relations help at the US Attorney.
I also suggest that you call/write to your three Congressional representatives [one in the House of Representatives and two in the Senate and ask their immediate intervention [this is an election year] - these people will represent your cause free of charge. Be certain when speaking with these people that they truly understand that TypeOne Diabetes is an autoimmune condition and has been declared by Congress to be a permanent disability.
I know several who have tried and all have been denied. SSA regards T1 as not qualifying as disabled. However the complications of diabetes are. So kidney disease, blindness, extreme neuropathy are disabling. But to my knowledge having T1 is not a qualifying condition.
I am sure someone has made it through with a T1 child, but I do not know any, good luck.
I know this is an old thread on the forum but figured that some people may still be looking to this for advice so decided to post anyways. My daughter was diagnosed at 6, we knew another local family who’s son had T1D and one of the first pieces of advice that they gave to me was to sign my daughter up on SSI, not just for the monetary reasons but because of Medicaid qualification/coverage as well. So we did. It took us three attempts, the first two applications were denied so on the third attempt we hired a lawyer who specialized in disability law and in addition on almost every answer I ended it with this phrase, “Type 1 Diabetes is by Social Security’s definition a disabling disease because it is a chronic medical condition that could lead to my child’s death”, I know that’s a bit extreme but SS’s definition of childhood disability is a disease that can lead to death. So for every answer I added that to the ending. Between that and having a lawyer she finally got approved and got approved for Medicaid. For some reason they approve some T1D cases immediately and others they make you jump through hoops. The family I mentioned in the beginning got approved on the first try, it all depends on who the person is looking at your case, and to be honest some of the people working there act as if the money is coming straight from their pockets and are extremely rude, do not want to approve anyone, and no matter what you do they will deny you. Once you have the weight of a lawyer and write out statements like the one I did, and continue to do on her reviews, the understand that you know the laws and that you’re not playing around with them. Like Dennis mentioned T1D is a disease that is specifically named as a disabling disease, it’s just some of the reviewers don’t go by the books, they want to look at the fact you’re child can take insulin, like it’s somehow a cure. Just don’t give up and you’re child/children will get approved because T1D is literally named and defined by their definition of disabled!
BTW it took us 2 or 3 years to get approved, so you have to be in it for the long haul, just be patient and eventually you will get the help that you need!
Thank you Davina. It has been a long while since I last checked in and have now decided it is time to get an attorney. Is it a disability attorney I should secure? Having been successful, should I expect to just jump head-long in and ready myslf for a battle to have the benefits my daughter is not only legally entitled to, but deserves?
If nothing more, could anything we receive be used for her college? In other words, it would not have to be “accounted for” in specific any ways would it? I mean, she wants to be an aerospace engineer, and has quite a road ahead. College being but one.
I do not want to “get what I can from the system”. I DO want to receive what we have all paid for dearly. The chance for my child to lack for nothing regarding her health. To have it not be something to stand in her way of living the wonderful life she was put on this earth for.
With that said, and I get very pationate and sometimes carried away, but just please tell me what kind of attorney I need and the statement you say you added at every question, I will take to heart and will do just that.
Thank you all. I will not make myself a stranger and hope to have an update soon.
On our initial admission to the Hospital for DKA, we were advised by the social worker there to try and apply for disability for our daughter. I applied THAT day. I am already a paperwork kinof person, but THAT was ridiculous! I waited (luckily) 9 months before being approved.
BUT…just recently, our daughter was denied because she was considered ‘no longer disabled’. I bawled for hours! There is NO cure for Type 1 Diabetes and just because her sugars are semi-controlled now, does NOT mean she’s cured! I was appalled! Of course I’m currently appealing this decision!
Hi [again] sherri @sherrik830, I hear what you are saying; diabetes has been identified as a medical condition for 3,500 years and given the name “Diabetes Melitus” [frequent passing of sweetwater] about 2,500 years ago and still to my knowledge there hasn’t been a cure.
YES, TypeOne Diabetes IS permanent and no one can tell your daughter otherwise; in 1990 the US Congress enacted P.L. 101-336 [Americans with Disabilities Act - ADA] which specifically states that T1D ia a permanent disability.
I’ve never personally had to “claim” this protection, but as a corporate policy officer I enforced its application.