@sryrstress thanks! I should have said that S is 21.
He does live with us. though it is not required that his payee be a parent, just that he bring a payee and that the person he chooses have ID and proof of income. If he does not take an individual to be a payee, then they will assign an agency to do it.
I’m trying to remember - I think they asked us about household income when S qualified at 21 but it didn’t affect his benefits. There IS a pretty significant reduction in benefits when you work, though.
It’s pretty simple for a parent to be the payee. They changed the rules recently so you don’t have to write a report of how all the funds are spent each year IF the payee is the parent.
Be sure to let SSA know whenever there are ANY changes. OF course, they will ask to see every paystub - my son’s case manager faxed them to SSA when S was working. If your son is ever hospitalized, make sure you let them know right away. You don’t get benefits if you’re in for an entire calendar month. They managed to not record my son’s dates of hospitalization correctly and sent him a letter last year that he owed them 8 months of benefits that they’d already paid him. Actually, he owed them only one. That’s when I had to get our congressional representative’s office involved.
Thanks, @MaineLonghorn
I doubt my son will ever be hospitalized for an entire month, though that is good info to have for just in case.
He is on the autism scale, further along than ADD but still high functioning enough to have a driver’s license, a regular high school diploma, and a job as a cart guy at walmart. I am not expecting his monthly check to be very big while he is working. I do know that a day will probably come where he gets frustrated and quits his job without understanding how to suck it up and look for another job first.
Also, his letter says the payee needs to take proof of income. I do not work, so have no proof. My husband receives a handwritten check every two weeks, so no stubs. His employer has refused to write statements in the past, so I doubt he will be much help. I am unsure what we can take to prove income?
Do you put your husband’s check in the back every 2 weeks/month? Is it approximately the same amount? You could take a few months of bank statements and your tax returns.
I think (not sure) they want the person who is going to handle the money to have their own support so that person isn’t relying on your son’s SSI for living expenses.
@twoinanddone thanks for the ideas! Yes, my husband is salaried, so his checks are the same amount every pay period. I will try your ideas, if they want more then they can tell me how to get it.
@compmom I send good thoughts for your full recovery. And totally get the who will take care of my child when I’m gone feeling - it is my biggest worry in life.
@bajamm my son sounds a lot like yours although he is not quite 16 and will not be getting a full high school diploma (he is on a certificate of completion track). He is fairly high functioning although I’m not sure he’ll ever drive (maybe). He will live with us as long as possible but has an older brother and younger sister who I hope will watch out for him someday (they say they will even now but they are only 17 and 13 years old). How wonderful that your daughter is willing to step up! My son would totally spend all his money on the wrong items if he had access without anyone overseeing it. Fast food, video games and legos would be where all his money would go…lol.
It’s nice to not feel so alone in this, sometimes it can be a lonely road and others just do not get it if they haven’t been there.
So my son had an appointment with the SSA today to set me up as his payee for the SSI money and to give his pay check stubs.
A couple of questions:
how soon will his medicaid kick in? and can he stay on our obamacare/marketplace insurance and medicaid at the same time? He gets medication from a pyschiatrist and will need to change doctors if medicaid is his only insurance as she doesn’t take it. It may take months to get it and we don’t want him out of luck on medication in the meantime.
the SSA people that determined his eligibility are requiring that he have a payee for SSI. He is angry about that. He does not want it in the first place. How hard or easy is it to get that requirement off? Not that I want to, I am just wondering.
I am wondering how he got accepted in the first place. It is not somethine we were expecting. We just filled out the applicaiton because his doctor seemed to expect that he was on it.
IMPORTANT! You should look into starting up a 529 ABLE account - it’s a way your son can save money and the assets will not count against the $2,000 limit. The ABLE Resource website is a great place to look into it. I have been selected as one of nine ambassadors in the country this year. You can see me on this page (my initials are TP so you can locate me): https://www.ablenrc.org/able-ambassadors/2020/
Thanks @MaineLonghorn ! We are on the state marketplace insurance since I don’t work and H’s employer does not provide health insurance. We do get subsidies. Will we have to pay some of that back?
Also, how does he get doctor’s visits, prescriptions, etc paid for before we get the card and such without us having to pay for it out of pocket?
I’m sorry, but I don’t know the answers to your questions.
I do know there is a system in replace to reimburse you for insurance if you don’t use Medicaid, so you should ask about that.
My experience is that medicaid will ask if there is other insurance (and pull it up through his SSN). Medicaid will be the secondary insurer and bill the first insurer, but you will not pay more for services. The primary insurer will probably not know that there is medicaid so, for example, the psychiatrist will just bill your existing insurance and you would pay the co-pay as you do now. Medicaid would probably not reimburse you.
You may have to wait for the card before scheduling appt through a medicaid doctor. I know someone who applied last Saturday (during a hospital visit) and the medicaid card was received on Tuesday. The hospital obviously had it expedited. It will of course depend on the state.
In our experience, in our state, the ACA insurance stops with Medicaid, at the time the application goes through, and even before it is accepted. I happen to know that while in our state Medicaid begins immediately, other states take awhile. In our state the best way to handle all of this is to go to a local hospital financial counseling center, where they have a direct line to Medicaid and other insurers. In other states it may be a community health center or even an insurance office.
Sigh, DS went catatonic today and had to be taken to the ER by ambulance. He was in and out of awareness for several hours. They’re going to keep him overnight and then decide what to do. Poor guy, he doesn’t deserve this. 
When he was alert, he was so polite and kind to everyone. One doctor said, “He’s such a nice patient.”
@MaineLonghorn is it possible he has a seizure disorder? One of mine goes into states that sound similar, and it was found to be temporal lobe epilepsy (which doesnt’ usually show up in an EEG). So sorry.
If anyone on here has experience with getting off Lithium, or a kid getting off Lithium, please PM me. One of my daughters has been on it for more than 10 years, with nausea and even vomiting every morning. The nausea is very limiting in terms of work and study. I am quite nervous about her changing meds since Lithium has worked wonders. I can give more info privately. Thanks!
Sending you a cyber hug ML. Hope they figure out what’s up with your DS and that he’s back home soon.
So sorry to read this MLH. Hope he is doing better today. Hugs.
And compmom no experience but hoping you get some good answers and your daughter finds an alternative med with less side effects.
@compmom, I will ask my son’s doctor about the possibility of epilepsy. Thanks for mentioning it.
Lithium has worked well for my son for years but he also gets nauseated from it. The doctor tries lowering the dosage periodically, and it’s always disastrous. In fact, this latest episode could be related to the lower dose. He was at 900 mg a day and now they’re upping it to 1200. Ugh.
@MaineLonghorn I hope your son is able to remain on Lithium. For some it is truly a wonder drug. I have no faith that any other med will enable the functioning we have seen possible in the last 8 years or so. My kid is determined to get off. The only influence I might have is in convincing my kid to see a bipolar 1 specialist. Not sure the current replacement med is going to do anything. I am already seeing signs of trouble…
BTW temporal lobe epilepsy can be hard to diagnose (make sure the neurologist is good with it, some aren’t) but I have known psychiatric patients who ended up actually having it. It can look like severe disassociation and can include periods of lost time. In our experience anyway. Lots of strange stuff. During one episode, my kid could not get out of the room because she didn’t recognize what a door knob was anymore. May be a little left field, but just wanted to mention it.
Good luck with your current situation. I wish there was safe long term anti-nausea drug!
Thanks @compmom. I’m going to talk to the hospital doctor about the epilepsy.