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Old 12-18-2007, 08:51 PM   #1
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Question Disabled adult child benefits

Deleted. I put things here I probably shouldn't have posted. Sorry.

Last edited by roses4lace; 12-20-2007 at 12:50 AM. Reason: embarrassed to post details

 
Old 12-20-2007, 02:09 AM   #2
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Re: Disabled adult child benefits

Thanks to all who read my original post. I've removed it due to my own embarrassment over having these problems. I've spent my entire life trying to "act and look normal", and it just gets harder and harder as I get older, and is finally just flat out impossible. I was a little embarrassed about what I wrote, so I deleted it.

Four SSA employees gave 4 different answers to my question. My lawyer's office said they will handle the situation with my disabled son's DAC case. So I filed for him today at the SSA office, and now it's in their hands.

I've seen others asking for time lines, here is mine in case it helps someone, it took me a little over 2 years:

Quit work Feb 1998. Did not understand the severity of my problems.
Problems got worse. Several people advised me to file for benefits.
Filed for SSI and SSDI Sept 2005
SSI denied Oct 2005, too many resources.
SSDI denied Nov 2005, not enough proof in the correct time frame (within the 5 year period after I quit work)
hired attorney, filed appeal Nov 2005
filed more doctor reports
SSDI hearing Oct 23, 2007, they told me it was "fully favorable" at the ALJ hearing
Fully favorable letter received Nov 1, 2007
Award letter dated Dec 16, 2007
First payment to be deposited January 2008
no idea when I'll receive backpay

Some things I've learned:
If there is any kind of ongoing problem, no matter how well you're "dealing" with it, have good doctor records with specific dates. My years long psychologist barely took any notes and never sent medical reports to my insurance company.

File before you've been off work for 5 years. SSD insurance runs out after 5 years. It's a pain to prove you were disabled during that 5 year period without lots of detailed records. I had very good records starting in May 2005, but that was too late.

At least one doctor needs to put a SPECIFIC date so SSA can latch on to that date as the onset date. My problem has been with me "for life" according to my doctors. That wording caused problems and delayed my approval.

They don't care how much pain you're in. Other people can't see pain. They only care about what you can do, and what you can't do. They aren't being mean-spirited - it's just that so many people can fake pain so easily, but it's difficult to fake not being able to walk up stairs or pick up a book.

When I looked over some of the doctor questionaires (RFC's), it appeared to be sort of like buzz words in the corporate world, or how job descriptions are written. Certain words carry more weight than others. Certain words describe clerical jobs, other words describe management jobs. Doctor reports and any self written reports need to use the buzz words that denote "severe", not those that denote "moderate" for the particular ailment.

At the hearing, they wanted to know how I worked in such a highly technical job so long, and now couldn't. So I described the office situation, specific accomodations that had been made for me, the environment that allowed me to work. And how that changed and all my accomodations were removed, and I couldn't work without them, it was too stressful and created daily meltdowns at the office. I provided many, many specific instances of activities my job required, and why I could no longer do them. I never mentioned my back problems or swollen joints; they annoy the heck out of me, but don't stop me from working. My allergy problems did come up, since they create ADHD and brain fog quite often, and make it where I have great difficulty comprehending technical documents and organizing any kind of work, even with allergy meds and shots. At every SSA office visit, every phone call to SSA, and at the hearing, they got to see up close and personal how I respond to stress.

Hire a lawyer for the ALJ hearing. They can take up to $5300 in fees, but it was well worth it to me. A good one makes sure you have all the records needed to win the case, and are good moral support during the hearing.

Blessings to all.

 
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Old 12-22-2007, 04:50 AM   #3
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Re: Disabled adult child benefits

I didn't read your post since I'm a newbie but I just want to tell you not to be embarrassed. Having an adult disabled child is a totally different type of experience as a parent.

When other people's children move each milestone; getting their license, going to a prom, college or work, moving into an apartment, purchasing their own car or home - it's all a reminder of what our sons and daughters may never do. And we all tend to hide in public situations where people are discussing their adult children; their successes and lives since our children do not have that life.

Just savor the little successes with your child when they happen, enjoy them for what they are and who they are and help them adjust to adulthood as best they can. Their own depression can be devastating. Take it from someone who has been there.

Life is too short. We are all different. And our disabled children, adult or not, know that all too well. They have been living with the differences all their lives.

Take care.


I just wanted to add that for anyone who thinks we wanted our children to grow up and be disabled and non-functioning in the workplace and be dependent on benefits, they need to think again. Being an advocate for a disabled adult child for benefits and quality medical care is disabling to the parent and a full-time job! We do what we do because we love them and we have to!

Last edited by antiquemother2; 12-22-2007 at 04:54 AM. Reason: more to say

 
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Old 12-24-2007, 01:55 PM   #4
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Re: Disabled adult child benefits

Thanks, AntiqueMother for your supportive words. I have fought for my son throughout his life, without quite knowing what was wrong. I always assumed it was the teachers, because he seemed perfectly normal to me. I would tell them "he can do this, but he can't do that", trying to help them work with him, but they would totally ignore me, then complain about the things he couldn't do. He's too smart, of course he can do that, he just isn't trying, they would tell me. Well, duh. Things were so bad (meltdowns, bullies, constant teacher complaints, severe depression), I pulled him out of high school and home schooled him the 11-12th grades. It wasn't until 2005 that we (he) figured out the problem, which was Asperger's Syndrome. And we both had it, no wonder he looked "normal" to me. We had both been having constant meltdowns for years, but I was conveniently ignoring my own, then brushing them aside as "unimportant". It was almost impossible to advocate for him with my own problems getting in the way.

Hiring a lawyer was the only way I could get through the social security system. The workers there were angels, going through all our records to find the important ones, filling out the forms for us, talking me through my meltdowns each visit, mailing things for me so things got mailed on time. I couldn't have done it without them, was just too emotionally unstable, and the brain fog was messing with my ability to comprehend how to do things.
Vicki

 
Old 12-25-2007, 06:26 AM   #5
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Smile Re: Disabled adult child benefits

Good morning Roses and Merry Christmas/Happy Holidays!

I was so happy to see your reply. You know as well as I do how isolating this is and how it's difficult to find people who have any idea what you are dealing with on a moment by moment basis with our AS children. I am suffering from depression and during the past 6 years since my son was 18 I have suffered from acute anxiety and panic attacks too - not knowing when and where his self-esteem would plummet and he would feel despair again and wish he were not alive. He used to pray for death as a means to end the pain he suffered.

Anyway, I did all my own advocating with the social security system and am on disability since I basically was unable to leave my house too worrying about him. I was able to get him on SSI before applying for SSDI, which he is now eligible for. It's a complicated experience dealing with the 'system' but it is so critical to meeting their future needs for medical insurance, etc.

My son hopes to one day have some degree of independence and has an associate degree because I was taking him back and forth to every class - took him 4 years to complete the 2 year program not due to intelligence but do to the social aspect of being in a classroom.

I was grateful to know that his issues weren't a result of anything we did as parents; it's neurological and so misunderstood because he is not affected physically to any degree and for all intents and purposes seems 'normal' but inwardly has so many aspects of autism. He is very sweet and trusting which has gotten him into trouble so many times which I'm sure you know about too.

Hope to see you on the board here again. It's so helpful to speak to other moms of adults.

Take care.

Last edited by antiquemother2; 12-27-2007 at 03:46 AM. Reason: correct spelling

 
Old 12-26-2007, 04:35 PM   #6
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Re: Disabled adult child benefits

I agree, it is very nice to find adults who understand the AS. My son started SSI in 2005, but there are so many rules and restrictions. I'm keeping my fingers crossed he gets approved for the SSDI. Unlike your son, mine refused to go to college, knew he couldn't deal with all the people. He picks up odd jobs every once and awhile that have a major negative impact on his SSI. He's one year older than your son, doesn't drive, and still lives with me, but has hopes that one day he will be independent.

I go to AS support groups in my area, but most parents there have young children. There are a few Aspie parents and adult Aspies, so that helps. Getting to the kids young seems to help a lot. Parents are trying hard, but still miss some of the obvious situations that trigger meltdowns in their kids. They will describe a situation they put their kids in, and I cringe inside, knowing that it would have caused a meltdown in me, even now as an adult. I try to pass along what we need to keep us calm, and describe my Aspie mind-set,which seems so totally different from "typical" mind-sets. I sometimes distress the other parents - they so much want a "normal" child, and then they see this 52 year old woman still having meltdowns.

We were in Wal-mart a couple of weeks ago, my son was waiting on me outside the ladies room, and a young man came up to give him a flier and talk to him. I came out, and saw the panic on his face, the young man left quickly when I walked up, so I don't even know what was going on. My son was a basket case, so close to meltdown he wanted to leave, but I assured him no-one would come up to him with me there, and I only had three items to buy. Got the first item, then went to the next aisle, it was full of people. I lost it. We put our one item back, and quickly left the store and both had meltdowns when we got to the car. We're the only ones who knew, so to everyone else, we looked "fine". Hey, we went to Wal-mart, there can't be anything wrong with us, right?

I've had so many people tell me how "normal" I act. After almost 20 years of counseling, I did pick up some techniques that help me survive socially. They don't see how often I stay home because I am so overloaded I can't even answer my phone. They don't see my confusion and franticness, nor see me hide away having a meltdown after most social functions. They didn't see me leave work for several hours after every slightest confrontation or disagreement. They don't see me buying groceries at 1am because there are fewer people, or using my credit card at the gas station pump so I don't have to go inside. It all looks normal, doesn't it?

My family knows, but I try to hide the meltdowns from strangers. I'm different from my son in that respect - I will go places, knowing it will most likely trigger a meltdown. He won't go anywhere if he thinks it will trigger a meltdown. So people don't see anything wrong with him (other than he rarely talks), and see me as a hopeless emotional basket case who is overprotective of her son. We are so naive and trusting, it's sickening. It's almost as if we have a neon light on our foreheads that say "kick me". The only thing that saved me in high school was meeting my future husband at age 13 - he would have thrashed anyone who bullied or mistreated me in any way. My son didn't have that good fortune, so suffered a lot more than me at school. On the other hand, I had to deal with a schizophrenic mother at home, which made home life horrible, while my son had a safe, calm, secure home life.

I know this neurological stuff is hereditary, and wonder if my mother passed down a little of hers to me that manifested in a different fashion. I was always terrified that my social problems and uncontrollable meltdowns were the first signs of schizophrenia, and was wonderfully relieved that it was "only" AS!

Keeping my fingers crossed that his SSDI comes through. SOON! I am so anxious about it, want the worrying to stop.

 
Old 12-27-2007, 03:43 AM   #7
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Post Re: Disabled adult child benefits

I would just like to say that if the whole world had AS we would be in a much better way than we are now. People with AS see things clearly, objectively and without emotion. They are the most honest and forthright. I wouldn't have my son any other way. If other people don't understand him or want to get to know him then it is their loss. The problem is that he wants so desperately to fit into the NT world and there is an invisible shield around him (it seems) preventing him from attaining that wish. He is talented, sweet, vulnerable and doesn't deserve to feel outcast by society. It is a particularly cruel disability because unlike more pervasive forms of autism it is hidden on the exterior - he's handsome and looks 'NT'. Inside he lives with despair and isolation - not by choice and there is no way out of it - he just has to learn how to cope with it.

 
Old 12-27-2007, 06:06 AM   #8
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Re: Disabled adult child benefits

Rose, I hope you get a positive decision soon. I've been reading this thread but haven't posted to it until now. I just want to say how proud I am of you, even though I don't know you, for how good an advocate you are for your son. He's so blessed to have you for a mom.

I kind of wish you hadn't deleted the first post. It was so honest and so heartfelt. That's the beauty of an anonymous board. We can say things here that we'd never say to people we see face to face. It's "safe" here! Sorry I didn't respond to the first post. I have only limited experience with a couple of AS kids and am still trying to understand how to connect with them. I just didn't know how to answer you. I'm glad Antiquemother came along!

Keep hanging in there. I'm looking forward to reading your post saying "we got approved!"

Blessings,
Emily

 
Old 01-08-2008, 01:51 PM   #9
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Re: Disabled adult child benefits

Called again today, still no decision made yet by the ALJ. Is it normal for the ALJ to take so long? The person at the 800 number says they have 90 days to make a decision. Mine was made in the hearing, so this is getting me really worried and on edge, that maybe they're going back and forth on whether to approve him or not.

 
Old 01-09-2008, 03:48 AM   #10
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Re: Disabled adult child benefits

We were approved at the initial claim level so the decision was made at the disability determination office in our state and then sent to the local social security office for processing. From what I understand from reading about time frames decisions from a hearing can take longer because they have a ton of cases to process. Once it's in their hands there isn't much you can do.

I would highly recommend signing up immediately for direct deposit once you get your approval. The govt really likes using direct deposit and your payment will be processed faster and even deposited a day or two before you expect it. You get a letter with your approval but in both cases we saw the direct deposit before the letter came. So why wait for a letter, then a paper check? I'd still be waiting probably due to their backlog of cases.

Even if you are denied at the ALJ level, still go for the further decision by the court because cases get overturned at the federal level.

It's so awful that we have to do this for the little money we end up with. My sons SSI (he is eligible because he was never able to work) is pathetic and they reduced what he was getting once the SSDI (under my work credits) was approved because there is a family maximum! So the govt has decided that based on what my former income was, that is all we are able to have.

The most important reason to continue is that once you do get approved, they owe you all the backpay and the medical benefit (medicare) takes 24 mos. from the date of your approval. They make you wait a full two years before you get medical coverage. I really wanted to secure the medical insurance as soon as I could for my son; not that I'm hoping he'll be on disability for years and years but because the great doctors and hospitals he sees are expensive and w/o medical he would have to see doctors who take any patient at all. He is doing so much better because of the doctors and hospitals who have helped him. My husband's medical insurance agreed to extend coverage until 25 and then review again. By Sept. we could be looking at a whole different situation and I'll be hounding the insurance company to keep him on the plan!

Last edited by antiquemother2; 01-09-2008 at 03:53 AM.

 
Old 01-09-2008, 12:57 PM   #11
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Re: Disabled adult child benefits

Quote:
Originally Posted by antiquemother2 View Post
We were approved at the initial claim level so the decision was made at the disability determination office in our state and then sent to the local social security office for processing. From what I understand from reading about time frames decisions from a hearing can take longer because they have a ton of cases to process. Once it's in their hands there isn't much you can do.

I would highly recommend signing up immediately for direct deposit once you get your approval. The govt really likes using direct deposit and your payment will be processed faster and even deposited a day or two before you expect it. You get a letter with your approval but in both cases we saw the direct deposit before the letter came. So why wait for a letter, then a paper check? I'd still be waiting probably due to their backlog of cases.

Even if you are denied at the ALJ level, still go for the further decision by the court because cases get overturned at the federal level.

It's so awful that we have to do this for the little money we end up with. My sons SSI (he is eligible because he was never able to work) is pathetic and they reduced what he was getting once the SSDI (under my work credits) was approved because there is a family maximum! So the govt has decided that based on what my former income was, that is all we are able to have.

The most important reason to continue is that once you do get approved, they owe you all the backpay and the medical benefit (medicare) takes 24 mos. from the date of your approval. They make you wait a full two years before you get medical coverage. I really wanted to secure the medical insurance as soon as I could for my son; not that I'm hoping he'll be on disability for years and years but because the great doctors and hospitals he sees are expensive and w/o medical he would have to see doctors who take any patient at all. He is doing so much better because of the doctors and hospitals who have helped him. My husband's medical insurance agreed to extend coverage until 25 and then review again. By Sept. we could be looking at a whole different situation and I'll be hounding the insurance company to keep him on the plan!

Hi Antique,
I have read the posts and am wondering how your son was elligible for medicare? My disabled adult son gets medicaid but was turned down for medicare because he never worked. You said that your son was not ever able to work. My son recieves SSI and like you and Rose it takes all my time to do everything that needs to be done for him. The paper work alone is a full time job. He was turned down three times before finally being approved for SSI and medicaid. It is very obvious to anyone that my son is disabled...he has CP, is mentally impaired, autistic, has ADHD and a speech and language impairment. I was so frustrated that they turned him down. But that's what you get with our government!!! Good luck Rose.

 
Old 01-09-2008, 04:59 PM   #12
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Re: Disabled adult child benefits

Ruskin,

He was just approved for SSDI under my work credits since I am on disability. He will get approx. 1/2 of my benefit and a reduced SSI amount; two separate checks.

In 24 mos. he will be eligible for medicare, same as anyone on disability.

Believe me when I tell you, I wish more than anything that he would return to college, finish his degree, find a job and meet the love of his life. I am not thrilled that at 24 years old he is collecting anything from the government. The only reason I chose to apply for him (and me) is because the last 6 years have been hell for us and I have no idea what to expect for him in the future. I will not always be around for him and someday he will need the benefits even more than he does now. I just wanted everything in place SHOULD he need the medicare in the future. It was important for me to do this as part of estate planning for him; he would never be able to navigate the bureaucracy himself of getting this done. In his case, his depression and anxiety was so intense because we never knew it was autism/asperger that was the underlying cause of his lack of social skills. He went all the way through high school eating lunch alone in a school of 4000. The people that did talk to him were mean to him; even some teachers. Because we had no idea of the severity of his issues (we had hoped that he would grow out of his awkwardness and blossom after HS), his depression became despair and he was hospitalized in a psychiatric hospital 5 times for attempted/threatened suicide. He did not want to live. He has only wanted to live for about the past 6 mos. We could not leave him alone until very recently and even now I worry when I do because he never leaves our house w/o one of us and is isolated from the entire world. He shut himself off from society.

My goal now is to work with him even more to develop life skills, finish his education, find a job (even part-time to start) and hopefully meet other people who he can share his life with. He is too content with us and would be lost without my husband, his brother and me. Emotionally he is at about 12 years old even though intellectually he is his correct age.

Last edited by antiquemother2; 01-09-2008 at 05:04 PM.

 
Old 01-10-2008, 12:04 AM   #13
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Angry Re: Disabled adult child benefits

I'm SCREAMING today. Major meltdown over my first SSDI payment that was supposed to be in my bank account today for me to pay bills. NOT. I got online at SSA last week and discovered they had my old account number (my bank was bought out last year). Corrected the number, and the message said the check would go to the correct account in February, no way to fix January. So I went down to the bank last week, talked to one of the bank officials, who said it would be fine, lots of people are still using their old accounts and old checks with no problem, they know where to put the money, and he made notes on my record so they would know the situation. Today the money wasn't in my account, so I went back down there. He said it should be there by midnight tonight. So I called SSA to find out what time they deposit the checks. They said it was already deposited, and I should already have access to it. And if something went wrong, they couldn't re-issue a check, but that I would receive 2 months payments in February. NO NO NO. I called the 800 number for the bank, and a lady said she would check. She could see the money in the bank records for me, even told me the amount, it just wasn't in my account, and said she would work with some department to see that it was put in properly. After being on hold for about 20 minutes, she finally came back and said they couldn't do it, THERE WAS AN ACCOUNT NUMBER MISMATCH AND THE MONEY GOT SENT BACK TO SSA ! ! !

I was so angry, so overwhelmed, I just totally broke down, crying, hysterical. And she keeps asking me questions, she understands that I didn't get my money, but how was "her customer service". I laid into her, not mean, but crying and hysterical, telling her I did everything in my power to see that everything was ok, I went in to the office to see what I needed to do, that I was hoping to pay off my overdraft today, that she was very nice, but she needed to call the man in the local office (she took his name and number) and tell him he didn't know what he was talking about. So loud and hysterical my son came to the room to try to calm me down. I finally told her I couldn't talk, I was too upset, and hung up on her. Then I called the man in the local office and left a hysterical message on his answering machine, telling him I wanted him to do everything in his power to get my money properly deposited, that I was not happy.

Then I called SSA again, and got hung up on. Called again, finally got to someone who said that because it was an automatic deposit and I had already corrected the account numbers, the money should just be automatically turned around and redeposited into the correct account in 3-5 days. Not as bad as it could be, but not what I was expecting.

Sorry, I just needed to vent. I'm sure I went overboard, but I just couldn't handle the disappointment. I built this day up for weeks, how I'm going to pay my bills, don't have to keep borrowing money from my dad, have been so excited, and so happy to see it come, and all my expectations totally trashed. I'm still crying, and even when it comes now, all the excitement and happiness has been eliminated for me.

 
Old 01-10-2008, 05:51 AM   #14
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Re: Disabled adult child benefits

Roses,

This happened with my first direct deposit too! I gave the deposit info to the woman in the local office, face to face, so I know I gave the right numbers to her. I even showed her my checkbook. I waited and just like you, depended on that money in October, when it was promised. It was about ten days later I finally got the direct deposit. SS said they had to wait to get the funds back from my bank and then reissue. I was crying too and really, really upset. This check was for two months since I was not going to get any backpay.

It finally did work out and since then I have had NO problem. My money is in the bank like clockwork on the morning of the deposit. Sometimes it's even in there the day before. Once the treasury has you in their system you are fine.

What happened to me was the woman in the local office did her part correctly, but when the payment center processes the payment it is done manually and the person input the numbers incorrectly!

It will all be straightened out and I only wish we were allowed to post tel nos. on this board because I found the phone number for the payment center online and got the people who issue the checks on the phone. Even so, they need to see it back in their hands, 2 or 3 days and then send out a new payment electronically so hopefully the time table they gave you is going to work. All depends on how fast your bank gets it back to them and mine was over the weekend with a Mon. holiday which meant no banking.

Take care and don't worry. You should take some of that first check and do something nice for yourself. You deserve it.

 
Old 01-11-2008, 08:37 PM   #15
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Re: Disabled adult child benefits

It gets worse! I went to the bank today to try once again to understand the problem. The manager was looking at my deposit, right there in their records - they haven't even sent it back to social security yet! They know right where it goes, my account, but won't put it there. Says they will send it back to social security on Monday. They've known it was a problem since last Wednesday, and know exactly where it belongs, but apparently they plan to get their 5 days interest off my money before returning it. And there doesn't seem to be anything I can do about it. Have been so distraught, didn't even occur to me to call my lawyer, but I will on Monday. The words "emotional distress" and "traumatized" come to mind.

I have been totally scatterbrained and unable to concentrate today, and had a major meltdown right after leaving the bank. Sometimes I think my screaming meltdowns need to be done in the situation where they were triggered, that maybe something will get resolved, and people will understand how important it is that they do their jobs correctly and ethically, but then I get scared that all they will do is call the cops and haul me to the psych ward and shoot me full of meds to put me out of my misery. We've all been taught to be "nice, polite and professional", no matter how much people screw you over, even when you know they are doing it deliberately. Perhaps if enough people got chewed out and publicly humiliated for their bad policies, they would be afraid of making bad policies, instead of common folk being afraid to complain strongly about bad policies. Our politeness and professionalism has gradually eroded all of our rights, and many companies are taking advantage of us with their unfair business practices (banks and credit card companies being the worst). There was something to be said about the Wild West and immediate retribution. I'm just so angry right now, and feel so helpless. Still on my rant. Sorry, ya'll.

 
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