No, SSI/disability is not handed out like candy!

Our youngest was diagnosed with Asperger's at age 2. He is now 23.

We were encouraged to seek out SSI for him, but for so many of his developing years, it seemed like he'd be okay.

Well, he's not. His first job, at 22, lasted four months. The moment he had a giant screaming meltdown in front of his boss, he was gone.

In 2020, when it became obvious that he would need some sort of support when we die, we decided to start the process of getting him approved. After all, he has a known disability for 20 years, has no driver's license, has not graduated HS, and his lifetime earnings is around $4,000.

The initial paperwork is brutal. It's a multi page, "are you sure you can't hand out straws at McDonald's for a living?" questionnaire. I am fortunate to have a sister who knows how to navigate this leviathan; I legit feel bad for people who need support who don't have that kind of help navigating this disaster of a bureaucracy. They not only have red tape, there's purple tape, black tape - bleep, it's the entire rainbow of tape.

This paperwork was filed in October, 2020. It took six-ish months, but we finally got the initial denial letter. Reason? He made too much money. (At this point, lifetime earnings is $0.)

We filed the appeal, which is another set of paperwork, additional documentation, blah blah blah. We filed that within 30 days. We were again denied, this time because he has great potential to earn money.

We filed the second appeal, with more information to counter their reasonings. So, we finally, finally get to talk to a live person, mid April.

For this, we have to prepare an entire list of exhibits documenting every meltdown he's ever had, every thing he's ever broken during the meltdown, etc., etc. They want a letter from his one and only employer stating why he was fired. For any of you who work in corporations, you know damn well that they will provide dates of employment and job title, and nothing else.

So, now my sister is sending me even more forms to fill out. Yesterday I filled out a three pager and today's form is 10 pages.

So, NO, the government isn't handing out bennies like candy. This is extremely difficult to get and there is no guarantee that this judge we meet will agree.

Guess what? If the judge turns us down, we start the entire, almost 2-year process, all over again, but it will likely be a dead end, as we've already had our at-bat.

 

some seem to get it like candy, others do not seems like

 

My sister has been helping her disabled clients fill out SS paperwork for close to 30 years. She has never, not even one time, have had one client get approved in the 1st submission, nor the second appeal.

Who do you know that got it like candy, just by mailing in the initial paperwork?

 

No, the process is not simple at all, and, just so you are aware, EVERYBODY gets a denial letter. They do that so people just give up. Thus, anybody that appeals and continues jumping through the never-ending hoops is viewed as "being serious". It varies from state to state but, essentially, that's how it pans out.

The other thing that might help is for the people involved in his life during the course of his development to make statements. They can usually just write letters or have their name and contact information added to the paperwork. I don't know where you are but in IL, there is a page specifically for adding people that can substantiate the applicant's health conditions as described in the reasons for the application. You don't have to do this for his doctor(s) because those statements are included in the medical records sent from all medical care providers.

You might have these things covered, but I'm adding them just in case:

Guardianship

Further, it might help to choose one or two people that can act as his guardian should something happen to you and/or your spouse.

Assisted living/Independent living with support

I can't tell if he lives with you all or not. Depending on his level of independence, you may need to find a facility that will accept him so he has the support he needs when the time comes. Death is hard on everybody and it's even harder on people that struggle with expressing themselves in an appropriate manner in stressful situations (I don't mean to cut down your son, CA. I'm not saying that at all).

Mobile mental health

Again, I don't know where you are but I know that mobile mental health services are available in IL and NC. They usually have a team of outreach workers and mental health specialists that will go see the client versus the client having to get themselves to an office. This is very beneficial for clients that may not have the ability or willingness to make and keep appointments in a traditional setting.


I wish you and your son the best, CA.

 

My sister has spent her career in Illinois; it's where I'm from. As I said above, she's never seen anyone get approved right off the bat. Yes, it's to determine if you are serious. Trust me, she gave me a long list of homework assignments to get all these things you mention. I'm waiting for Fresh Air to substantiate the claim that some people get approved immediately, since it completely goes against policy.

 

could be the areas, states, parties involved, ect..... but some do get approved easier than others, for many that really need it, it's a nightmare

but you're right, they almost always deny the first time

 

Sorry I must have missed the part about IL. I'm glad you have your sister to help you.

I, too, have never heard of anybody getting approved immediately for SSI. It is very fast to get approved for EBT and sometimes even Medicaid, but not long-term SSI. I'd be interested in what Fresh Air presents about that as well.

 

well, I am thinking like the blind, people like that might get approved the first time

 

Why do you think a blind person's application would be expedited?

That sounds counterintuitive because **everyone** applying for disability has some sort of disability (or is lying about having one). Your comment makes it sound like blind people are in "more need" so their apps gets rushed through. Is that what you're intending to convey?

 

never said it would be expedited, just that it may be approved the first time

being blind is easier to get medical proof, mental issues are often as much art as science and people can't "see" the issue, no pun intended

 

I feel for your struggle. It must be hard to worry about your kid for the rest of your life because of a disability. Well, I worry about my kids too, they are 12 and 17 (for example, will they go to college? Will they get a job?), but I am sure your situation is on a whole other plane of worry level. I pray that everything goes well for you and him.

These kind of situations are exactly why I FULLY support the SS system, and I don't mind paying taxes into it. In reality, it could happen to any of us. What if my son gets into a bad car accident tomorrow and then becomes disabled for the rest of his life? I am glad that the SS disability system is here in such cases, so at least disabled people won't have to live in abject poverty after their parents pass away.

Of course, the ones who malign the system only look after their current pocketbook, and how much they HATE so pay SS taxes. They can never imagine to at one point in their lives they may be in the situation where they NEED the system. It's this kind of short-sightedness and greed that will eventually destroy SS, and it WILL happen, it is only a matter for time.

 

Sorry, I don't agree with your reasoning. Every single disability applicant has some kind of medical proof. Why is a blind person's medical proof "more important" that it gets VIP consideration?

 

yes, but being blind is more cut and dry than many disabilities, thus may be approved the first go round, not saying others should not be, just saying that is one of the disabilities more likely to be approved on the first go round

 

No. Nothing gets approved the first time. Nothing. Not for any reason.

Some may get approved on first appeal, but it is not automatically assumed that blind people can't work. At one of the largest corporations I've ever worked for, our VP of Technology was blind. He brought his dog with him to work.

 

ok, I will take your word for it, that never happened, never has happen, can't happen, you convinced me

 

OK. I accept that you believe that for the reasons you stated. That's not how it works in real life but I vehemently defend your right to Freedom of Speech.

 

No, I've worked for city and state government and my mother was a bigwig with the state. NOBODY gets approved the first time.

 

The disability process is ridiculous. And it doesn’t have to be. The people applying for disability need the services. I understand completely about your kid. The system is horrible and it needs to be fixed. Best of luck to you. Have you tried to get in contact with a disability rights group to help with legal fees?

 

This is true. My brother, who suffers from severe chronic pain due to a TBI ( traumatic brain injury ) and cannot work without meds, and even with meds, work is difficult, and now they are shorting his meds so he suffers a lot, and cannot work all, applied for SSD and it took like three months of jumping hurdles of every kind in order to get it.

No, they don't hand it out like candy, that's bullshit and right wingers and libertarians who say so do not know what they are talking about. The Gov goes out of it's way to make damn sure you deserve it. And that's probably the way it should be, though I don't wish it should have taken so long for someone who is in much pain as my brother is.

 

yep, forgive me, I thought there might be some cases approved the first time, but you all convinced me, it can't happen, it's impossible, I see how wrong I was to think that

 

My sister has been doing this paperwork for her clients for 30 years. I have an expert for free!

I understand the need to be careful. If it was as easy as some claim, I could write "back hurts," on a cocktail napkin and get a check. I approve of a stringent process. The actual process, though, is downright silly.

Get this - I have to spend $92 to have SSA send us his lifetime earnings report, so we can give this to, wait for it.... the social security officer who will decide our case. Such a racket.

 

FA, you don't have to apologize. One of the beauties of being able to have discussions is for us to learn from one another.

I also appreciate the fact that you are willing to reconsider your opinion because many people like to just ignore anything that doesn't fit their preconceived ideas about a topic. Kudos!

 

Holy smokes, Batman!!! It only took him THREE MONTHS? That's amazing dude. I don't know anybody that got it within 18 months.

 

You aren't usually so sarcastic about legit problems people have, but like MJ, I support your right to be so.