Does anyone know when you should start applying for SSI?  My son is 15 and we don't qualify, because of our salary.  My understanding is, when our son turns 18, he will qualify for ssi on his own.   Is this correct?  Any information would be most appreciated.

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Karen -

I only know this because my previous boss had to do this for a disable child who didn't have DMD. But they got a lawyer and the lawyer helped to walk them through it. For them it was more than just getting her qualified for SSI. I think they started shortly after her 17th birthday.

I hope that helps. Janell
We helped our son apply for SSI after he turned 18, we did not need a lawyer. The main reason for us to do so is for PCA help when our son went to college and lives away from home. In addition he now qualifis for MA which picks up the co pays for our health insurance. Good luck, Cheri
Once your child is 18 you are right that he will qualify for SSI on his own. You don't need a lawyer unless you are denied. Your child will not be allowed to have more than $2,000 in the bank(they will check almost every year and you must provide them your son's statements) so you may need s "Special Needs Trust" if he will have more money than $2,000. He will also be on Medicaid and have aide hours provided. My son and I went to a University together and we both graduated. It was easier if I went to be his aide than to put him at the mercy of PCAs. They don't always show up and my son would not be able to call for help. Others have been creative and had roomies to help, so there are ways our sons can go off to college.
Just curious do you know if savings bonds count in the $2000?

I believe they would. Before you apply cash them in.

Darcy Tumminello said:
Just curious do you know if savings bonds count in the $2000?

Yes! Unless they are protected in a Special Needs Trust.

Darcy Tumminello said:
Just curious do you know if savings bonds count in the $2000?

Also, if a person on SSI dies before the 15th of the month, SSI will want that money back. Our friend died on Valentine's Day (14th) and got a letter asking him to refund the money!!!!
Thank you all very much for your help. I know some people have said you should start now so as to get on some waiting list. Not sure what was meant by that information. Cheri, can you explain to me what PCA and MA mean?

They were probably talking about the different Ohio waiver programs. Many of these only take into consideration the childs asssets independent of the parents. You would apply at the ohio dept of job and family in you county.
I have two sons with dmd and they both received SSI benefits once they turned 18, but you actually have to wait until they are 18, otherwise they will still include your income, so it does not help to apply early, I live in Missouri, it took about 3 months both times for it to be approved, and sometimes depending on when you apply during the month you also get retroactive benefits.
Karen, what you can done is to start getting ready. You can start gathering all your sons information for the application. You can download the Adult Disability Starter Kit from the Social Security website, you can start getting all the information together about all his Drs (names, first time seen . . .), Clinics, lab tests and surgeries. If you have all the information together then filling out the online form will be that much easier. I personally found it an emotionally exhausting process, I relived every Drs. appointment from the time Jonathan was diagnosed. I could only work on the application for little chunks of time. They give you a reentry # so you can take your time filling things out and look for any information you don't have at hand. I attached a sample of the questions they ask that at least for me required some thought.


If there is 529/Educational IRA  money (dmd son is the beneficiary), will it count towards $2000 limit for Medicaid? I am saving some money for his college  and should I transfer that money to my non-dmd son



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