I would absolutely re-visit the SSI, only because it is a big help and can give an unemployed person the feeling that at least they have some money to contribute to their care.
Some people choose to do it on their own and can accomplish it with ease. Others meet brick wall after brick wall.
I can speak from my own experiences. I went with a Social Security disability attorney that came with a glowing reputation for expediency and I was very pleased with his work. Having him navigate the forms and the court was a great stress off of me.
What they need (initially) is a work history including the last day worked, W-2’s are helpful if still available and they require a detailed history of hospitalizations, medications and a list of doctors seen etc…and when filling out the form I was advised by a SS employee (who was also a personal friend of mine but not employed local to me) that the people that make the determinations look for key words throughout the application like chronic, persistent, and needing assistance and or redirection etc…over and over…not sure if that helped the speed of processing or not but with the help of the attorney I had my son’s first check within 120 days, sooner I think.
The attorney charges nothing if he does not win the case. When he wins the case he will take 25% of whatever your son’s retro pay would be meaning pay equivalent to an SSI check per month going all the way back possibly for the entire 2 years your son has been out of work (unless there is a cap on that–these days I don’t know, the cap was 2 years when I applied for my son.) The attorney gets nothing else beyond that. Your son continues to get a monthly check from then on.
In addition your son is eligible for Medicaid and then also after I think a year on disability he gets Medicare also and the medical coverage covers pretty much everything. He can also in some cases get an EBT or SNAP card to help out with groceries, that is through job and family services though.
If handling money is a problem for your son you can be named as a representative payee which means his expenditures would have to go through you. I forget the steps for that or if that only comes with guardianship but an SS attorney could explain it all at no charge.
I did all of this for my son including getting guardianship of him and being rep payee and everything when he was 21 and now he is 34. He is doing well living with me and I still assist him in things but I keep things the way they are still, because it works for us well now and if (god forbid) his meds stopped working or he suddenly got sicker I would not want to start all over again in order to help him. On the other hand if he was well enough to work, even part time they have rules about that and a recipient can work a certain amount of hours, etc…without losing benefits. This helps if a person like our sons want to give work a trial period to see if they can handle it after they have regained their stability. Some can and some can’t. I hope my story helps a little, best of luck.
PS>> To answer the question of when is it time? (I just realized I didn’t actually answer that) I guess when you or your son needs the income or the extra insurance which he would not have any premiums…
As for me, I did not have a very high paying job at the time, lived pretty much on a shoestring budget and I was a single mother on top of that so, it was imperative that there be some additional income to provide for my sons needs, we couldn’t have made it together without him having some kind of income and insurance.
I think it should be more up to the caretaker whether disability is applied for more than the person being cared for only because of the expenses belong to the caretaker and parents do tend to absorb everything no matter the cost but if anything (god forbid) happened to the parents/caretakers it would be very hard for our sons or daughters to get set up on everything by themselves, not everyone will agree with me on that and that’s okay. Everyone is different in their approach and perspective. Best wishes.