Can't believe what happened.

[KayLaw]

My son is severely autistic and I'm trying to advocate for him. When he turned 18, I went to the local SSA office to apply for SSI. The rep told me 120 days for a decision and to call if we hadn't heard by then.

Well, that was today. When I called her number I found out she's out of town but another rep gave me the number for DDS so I could check on my son's case status. Turns out they'd never heard of him. I called the SSA 800-number and it was confirmed: SSA never sent my son's medical information to DDS. Why not? No one knows. The 800 guy said to wait and ask the on Monday.

I can't believe I've sat here waiting for 4 months and now I have to start this all over again on Monday. Since something went massively wrong on their end, do you think I could ask my rep to flag my son's file? Maybe push it up to high priority with the veterans?

Sigh. So discouraged now.

[gateley]

1. I'm so sorry - this is a big problem with the agencies like this. I just spent

about a month trying to get a Driver's License problem straightened out. I was in tears with frustration and anger, and that was only for a license! That this should happen to you and your son is beyond reprehensible. :hug:

[monmouth]

2. Don't be discouraged. If at all possible make an appointment to

go to the office in person. Usually good results that way, and you can watch as info is put into the computer and are there to answer any questions the rep may have. Bring all necessary paperwork and meet only with your rep. They usually are very accommodating. Wishing you and your son well.

[dmr]

10. Agree on the Congressperson, and if that doesn't work, call one of your Senators n/t

[monmouth]

11. Haha, actually I meant the Social Security office. That's where

the nutz and bolts of these problems are solved..I think..

[Not Me]

3. I would refer this to my congressperson

and see if it can be expedited.
This is not right.

[glinda]

5. I second that opinion. Sorry what has happened to you and your son.

[Crabby Appleton]

8. Another vote to contact your congressperson.

They can help.

[Orrex]

4. That's pretty goddamned outrageous

It's flatly inexcusable. They should have sent you periodic updates during the "decision period," if only to confirm that your claim was active.

For that matter, if there's a built-in delay of 120 days, why wouldn't they allow you to file four months prior to his 18th birthday?!? It's not as though he was suddenly going to become non-autistic!


I am endlessly disgusted by the many mechanisms by which incompetence and bureaucracy screw society's most vulnerable.


Did the guy give you any idea of what to expect when you call back on Monday? I would hope that they're expediting the process.

Did they give you any sort of confirmation slip when you spoke with them four months ago?


Outrageous!

[KayLaw]

15. So true.

It's true incompetence. But she typed out several documents which can be used as a confirmation. No, the 800 guy seemed clueless.

[Orrex]

17. Best of luck to you on Monday

Let us know how it goes!

[Peregrine Took]

6. Too bad you couldn't track your case online....

Maybe someday.

[aquart]

7. A tracking number is a BRILLIANT idea.

OMG. Think what it would do for VA cases, too.

[KayLaw]

9. Thank you all for your help.

You are all so understanding and I need that right now. I have considered calling my congressman. I've read that they can have the files flagged so they don't gather dust. The rep who gave me the DDS number was very nice but seemed harried and overworked. My rep was (is) very nice. She faxed the medical info while I was there so things wouldn't take long. She got all the info on our mortgage and grocery bills and set me up as my son's payee.

Somewhere along the line something went really wrong. The 800 guy was nice but not helpful at all and seemed confused himself. I agree that there should be a way to check up on things and it should be online. If FedEx can do it, so can our government. It's been hard to be patient all this time but I was foolishly confident things would work out well. My son was diagnosed by Dan Marino's neurologist at two, never been mainstreamed, will never get a H.S. degree, has been approved for Medicaid, etcetera, etcetera.

Well, thanks for being outraged on our behalf. I guess I'll stick with the rep we already have and call her first thing Monday morning. If I have any problems I'll have to call a rep or an attorney.

[monmouth]

12. Kay, I didn't mean the sen or congress persons office, I meant the

SS office that is handling this. That's where the mess started and it is their information that needs to be corrected. I used to work "intake" at Children's Psychiatric in Red Bank, NJ a wonderful facility for autistic children from young to teens. This should be corrected asap...

[KayLaw]

20. You're right.

After sleeping on this, I'm thinking of calling the local office and seeing if there is a supervisor at the office who can get things corrected today.

[jwirr]

13. Do you have proof that you filed that long ago? They have to pay

back pay in cases like this.

[KayLaw]

16. Yes, I have it.

I'm going to ask her to resubmit the info rather than reapply.

[jwirr]

18. Good. This is not acceptable.

[KayLaw]

14. Back again.

The thing about going back to the office with all the info is that I already did that and I believe that she did fax it right then, as she said. I will call her and give her a chance to investigate but something did happen somewhere along the line: two weeks ago I received an expected letter of denial for SSD. The letter said Scott doesn't have the work credits to qualify, which we know of course. His rep had prepared me for this letter and told me to ignore it, keep it in my file, and wait for the SSI letter of approval (or denial) to come.

I called the local SSA office for reassurance the day that letter came and the rep I got on the phone reiterated the advice and said the SSI letter should come within days.

I did keep that letter in Scott's file along with everything else. And, YES, thank goodness, I have copies of everything including everything the rep gave me the day in October we applied. It sounds like I'm really going to need it. I'll ask her what she can do to fix this thing and if she seems less than helpful, I'll have to seek help from the law or congress.

Thank you all so much for the advice and support. I didn't know we had a Disability forum and I'm so happy I found you.

[xynthee]

19. Best of luck to you.

You seem to be doing a great job of building your case, covering your ass, etc. And you're remaining calm!

For the millionth time in the past 24 hours, I wish I had become a lawyer. Then I'd be able to give you some good legal advice.

[KayLaw]

21. I hate to be a pest but I have an update!

I decided to call the local SSA office to speak to a supervisor but waited an hour on hold. I decided to try the 800 number again on my cell since I was just sitting around waiting anyhow.

I got the most helpful, caring agent who took a lot of time with me and figured out what happened. A technical advisor pointed out that there was a problem with Form 827 which is a medical release form The local SSA had my son sign and date it and, because of his disability, it's not legible. They sent the form back to my local office who neglected to call me about the problem

The 800 agent was very apologetic and dismayed on my behalf. She set up an appointment for me on Monday so I can go in and sign Form 827, have it faxed to SSA who, I'm told, will expedite the process.

Thank you all for your concern and good wishes. I just thought I should let you know where things stand. I feel a little better. At least I can stop ruminating, wondering what the hell happened.