DS21 has been determined to be disabled since about the 6th grade. He was covered under the TEFRA program for Medicaid and has been on SSI and Medicaid since he turned 18, due to his epilepsy.
He is up for review on next Monday. I do not know how we would/will function if they determine he doesn't meet the criteria any more. His medications cost about $2,000 a month. Even with insurance coverage the copayments run about $250 a month.
This is the first time in his life he has ever been "stable". It's been almost a year since he had a seizure. But he continues to have extremely poor short term memory, has difficulty learning new tasks and is unable to work more than a couple of days a week. (He becomes very overwhelmed, fatigued and has headaches) He is quitting his part time job because the new manager is unwilling to work with his limitations and he is not coping with it at all. (Yes, I know he could probably pursue an ADA claim, but that's a whole other issue)
At any rate, I am very stressed about this review, because I don't know if they'll use the fact that he has not had a seizure in almost a year as an indication that he is no longer "disabled". If they spent a week with him, they would understand. It's little things that most people don't notice. He, at 21, still has difficulty distinguishing reality from fantasy. He watches cartoons, childrens movies, etc, and will get really involved in them to the point of being upset by them, kwim? He has no concept of time or distance. (For example, we live 20+ miles from where he and I both work. It takes about 30 minutes on a good day to drive to/from work. If we are running late, he has no idea how long it will take to get there..ie, he will call work and say, "we will be there in about an hour" or "We will be there in about 5 minutes") He, after 18+ months of working and receiving a direct deposit pay stub, still cannot grasp that his money is deposited automatically into the bank and he doesn't have to have the pay stub to have access to his money.
We have tried and continue to try to prepare him for being independent at some point. But it's so frustrating to see how his little brother, at 14, can grasp all of the above concepts without difficulty, and ds21 struggles daily.
I don't know how to convey all of this during a phone review with Social Security.
Please just send prayers/thoughts/mojo for us. Thanks.